Blue Hospital Socks

Background: Epilepsy

ep·i·lep·syˈepəˌlepsē/

noun 

a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

I sat up in bed in fear that the octopus would get me again. It was like some strange nightmare except I was awake and this was real, there were no scary clowns or I was naked in front of class  nor were my teeth falling out.  Something has caught around my throat and face suffocating me  making my neck up convulse and contort strangling me until I could hardly breathe, my six year old mind thought in its innocence that it was an octopus climbing on me and sucking my face. 

I thought these episodes were normal, that everyone had them, it was just never spoken about or perhaps it was a simple thing like your nose running when you have a cold, just a normal bodily function. However when I asked my grandma on a car ride back from her house or my mom when I woke up from sleeping or my dad on spring day at the park, they all ignored it. 

As I got older in the summer of my 8th birthday i started to experience other strange symptoms of the what I called it "The octopus sickness." At random moments I would feel the octopus take grip around my throat and  squeeze until I was in tears, at other times I would taste the octopus, it tasted like dark chocolate. I would cry to my mom about my throat and it felt like I was being suffocated and I thought I could maybe possibly die. I told her this is how my throat felt during one of the episodes I have late at night before I sleep and because this is something you cannot ignore she put a baby monitor in my room so I can call when this happens. 

It happened. I woke up and the octopus begane to torture me. It gripped my throat and squeezed and my left face and arm would go limp as if I were dead and I would make a gagging noise like a strangled animal while saliva dripped down my face, it was not something pretty to witness or exprencence. My parents burst in the room, but by that time the episode had concluded. They asked me questions I could not understand and gave looks I could not process because the episode had left me in a clouded daze. I did understand one question.

"Can you smile?" The answer was no, I could not. I could only move half of my face the other was cold and numb. My parents called the doctor and I fell back asleep hoping the Octopus would not attack again.

I saw my pediatrician a short time later, he thought it was a stroke, which my episodes did appear to be due to my cognitive function and daze. He set up an appointment at the Children's Hospital of Philadelphia or CHOP for short, one of the best hospitals in america, that happen to be a short drive from my house. 

I woke up early in the morning by my parents. The fog outside made it impossible to see in front of me as it was my future. As you step one foot in the fog you can see only your feet and hands and that's all you know in the moment, where you are. You also know there is more beyond right here, you just can see, hear, smell, feel, or taste it, it is completely uncertain what the next step holds and what will happen. Sitting in the car I had no idea what my future held what was going on or what would happen at the hospital, I felt trapped in the fog. 

Up the elevator at the top floor was the outpatient neurology center or the "wood" center as the hospital calls it. I gripped my mother's hand as we signed in and sat in the waiting room before I got a neurological test called an EEG used to track brain waves and seizure activity in people with neurological disorders. The nurses ushered me back into a room with a stretcher, a TV and too many machines at that time I could not count. I had to lay on the stretcher as they put small stickers called electrodes on my head with an adhesive that smelled so terrible I can't draw much comparison. I made a joke I looked like medusa with wires coming out of my head that looked like snakes ready to turn the nurses to stone. Then I was told to blow on a pinwheel for 5 minutes, odd? The octopus returned I tased the dark chocolate fill my taste buds I told the nurses and they jotted it down on a piece of note paper, then I realised the screen my wires were attached too. The screen had several lines and every twenty seconds they would spike up and down and as I blew on the pinwheel they would go crazy like static on a TV, was this happening to me?

I sat in the waiting area, my head sticky from adhesive and my mind anxious about what it meant. For ages we sat waiting to be seen and for the answers to come in until finally we heard my name behind us and a lady lead us down a hallway into an exam room. I am asked to push her hands and walk across the room in a straight line which i thought was rather peculiar because I thought she would tell me what was wrong with me simple as that, it was more complicated apparently. She took my history asked my parents every question under the sun  and then the results were in. There was not other way to put it besides the simple diagnosis of 

Benign Rolandic Epilepsy (BRE for short)

She explained it to me first as a " dance party in the brain and getting the brain angry " meaning my electrons (the parties) were going crazy and misfiring (the dancing ) causing me to have a seizure (getting angry). I was confused. Then she explained it to my parents and what the effects are. That I will have seizures before going into deep sleep and after coming out of deep sleep, she said I might have trouble in school, be tired and lethargic, and have a lower attention span because of the effect of the seizures. 

I cried. I cried because I was confused, i cried because I was scared, and I cried because I didn't know better than to cry. The doctors assured me I was fine and that it will go away when I'm older and it can be treated with medicine, I still cried. 

I tried a drug called trileptal to calm my neightly seizures, it didn't work. I was on this drug for a year and the side effects were atrocious. I was suicidal at age 8, i wanted to die, i tried to cut myself and I had rage fits every day where I threatened to kill myself and my family, i was 8 years old. To add insult to injury my seizures got moderately worse. This was a year of my life taken by a drug, eventually I had to be taken off. My life was better even if it meant I was drained and seizing every night. The seizures persisted until puberty when I was 11 and then they slowly got better until I was almost seizure free. This happens to most children with BRE they periste all of childhood until puberty and they eventually stop. 

This is one of the milder forms of childhood epilepsy but still at mild epilepsy is a beast. It is April 8th 2018 and i haven't has a seizure since last july (yay) next week I find out the results of my last EEG to see if my seizures will continue. 

*Disclaimer* I am not asking for pity or playing victim I simply want to get my story out to help and connect with others. Thanks for reading.