O wow where do I start. There’s so much that has happened seeking the testimony of my life. My life in regards to Epilepsy, how much of an impact it has made, how much of a shift it has caused, how much has changed because of it. And hear me out, this is not a bad thing. Epilepsy has given me those trials, test, and struggles, “not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3-5). I rejoice in what has happened, how my story was created, and how each chapter of my life was played out because of how epilepsy is intertwined in every sentence of my life. This story of mine can be a book, it is a book that is continuously being written. But I will share only a glimpse of what my story contains:
Page 1: Introduction
Two precious twin girls, born in 1995, healthy, clean, happy, seven minutes apart, all was well, no health issues, no serious injuries (but yes there was crying, double the amount). Nothing was “wrong” with Haley or myself; however, just three months over being one year old, mothers intuition kicked in. Baby B (myself) was having a stroke. Little did anyone know that there was a deficiency with my MTHFR Gene. There was nothing anyone can do or say at that moment that could stop my story from beginning. This is what had to happen, this stroke that paralyzed the left side of my body had to happen for epilepsy to be part of my life. With rehabilitation, practice walking, and piano lessons, all helped me regain strength in my left side so it is no longer noticeable to the human eye (unless you ask me to show you). There is nothing anyone see that spells out “stroke” on my forehead (well on my scalp), and I’m grateful for that. This right hemiplegia (see I’m smart) is only the first page.
Page 2: The ball begins to roll.
Seven year old me was happy, healthy, shy and clumsy. No sign of the stroke that plagued me, no further sign of possible seizures. Not yet, it will come. Seven year old me didn’t know there was a difference between Baby A (Haley, my sister) and Baby B. We dressed the same, we laughed at the same jokes, I used her favorite towel, and we even wore the same overalls. We were the precious little girls that had the best manners. We would be so quiet, no one would have noticed that I was having a seizure.
Being a shy kid, I wouldn’t talk to many people, I would hide behind my stepmom (Karen). I really wouldn’t talk to anyone especially at my brothers karate practice. Such a tiny space, and so many people, so little places for me to hid. But I had to stay, because I had to go to gymnastics, the only thing I really did love. While I was hiding behind Karen, practice was over, she whispered in my ear, “would you like to go to gymnastics now?” I responded “…”, wait, I didn’t respond. I was in my own world, staring, picking at my clothes, chewing on nothing. Hmm something was wrong:
“Casey, Casey, Hello?” – Karen,
“Yes, Hey, can I go to gymnastics now?” – Baby B,
“You can’t, something’s wrong, we have to go home”
“But I really want to go, pleaseeeee *tears*”
That’s when I know I had my first seizure. I didn’t know what that meant, I thought I woke up from a nap because my brothers practice was so exciting. All I wanted to do was enjoy my seven year old life, but ew, I had to go home. Home again, home again. All I wanted to do was sleep, it felt like forever since I slept last. But I couldn’t sleep for too long because I had to go to Dr. Beans office (Dr. Jelly-Bean aka The Neurologist).
Fast forward to tomorrow: All I knew was that there were fun toys, and a sticker at the end. I would go to this place where I would have to take my shoes off, go on this thing that had numbers on it, and get hit in the knee with a hammer thing and my leg would bounce (weird?). I would smell my Doctor because he would put this thing in my ear to see my earwax(?) I had no idea what was going on. But as I came and went, here and there for a few months, and more seizures later. The diagnoses came: Epilepsy. Epi-who? Eight year old me didn’t know what that was. How do you even spell that? E-p-i-l-e-p-s-y. Okay, it’s hard to pronounce, and hard to understand, but I have it, okay, I’m okay with that, I’ll accept it (like I have a choice). But eight year old me was okay because somehow I knew that this is what needed to happen.
Page 3: Middle School *Duh duh DUHHH* (2007)
First day of sixth grade, yay! Walking up three flights of steps, getting my own skinny locker, and having classes with no one I know, woo!
Oh yeah, and also, being that kid who has seizures… But no one knows me to have seizures yet, because they haven’t seen one (*insert optimism*) The first few months of middle school weren’t so bad. The kids were nice, I guess, not talking to me, but at least they weren’t bullying me, saying mean things. Just not talking to me, and avoiding me. Hm, I guess I would stay quiet then. August, September, October, November, December, January, February, March and even most of April was good, some seizures here and there, but nothing major, I mean like nothing “OH MY GOSH” major. But then April 17th decided to be a thing. I had a fever, no big deal. I wanted to go to school, to learn, to see my friends, so a slight fever wasn’t going to stop me from doing that. So I went into class, got through most of the day but then around 1:00pm I didn’t feel so good. I know social studies was not my favorite topic, but I decided to take a nap on the ground, shaking, making a scene (weird). But I didn’t know, I didn’t know I was having a seizure, I was sitting at my desk, in the middle between my friends, I looked up (because I thought the ceiling was pretty? no), my friends shifted towards my teacher, “Something’s wrong with Casey”. I couldn’t hear any of this, but so I was told. I was convulsing, shaking, dancing, whatever people want to call it.
But I was having a grand-mal seizure…in the middle of class…in sixth grade…I was twelve…with everyone watching me…ouch. But at least my sixth grade ‘boyfriend’ wrote me a sweet card. Saying “why did you have a ‘cesure’ and never told me before, I still ‘love’ you”. But as I was being placed on the ground, my caring teacher put me in her lap, ensuring I wasn’t going to hurt myself (physically), and she even held my hand *insert aww here*. It took the nurse about five or so minutes to climb three flights of stairs, still seizing, but she didn’t know someone was having their very first grand-mal seizure. When she turned the corner, into the classroom, she saw the damage, my damage. *Bam* She bolted into action, like a super-nurse. As she took me (laying like a blob at this point), 911 was dialed and the school went on a soft lock-down just for me (how sweet). Understandably, the paramedics had to reach the third floor of the building, and students couldn’t get in the way of ever-so-important me. While I was on the stretcher, I didn’t wake up until I was in the ambulance. For a quick second I remembered seeing my other awesome teacher stand to my left. The first question, “what happened?” I was dazed, out of it, barely awake. She answered (I think) “You’ll be okay”. As I drifted off again, I felt okay, safe, knowing it was going to get better from here. How could anything be worse than this? I thought, or would have thought. I woke up in the hospital, my grandmother on my left now, my dad by my feet and a nurse. I still don’t really know what had happened at that point, but all I knew is I felt better. No more feeling sick, stressed, or worried, just tired, really tired. I was glad that traumatic event was over, so no one would make fun of me, at least for today.
Page 4: Middle School pt. 2 (2008)
Seventh grade! Yay a new year, new me right? wrong. I still had the same few friends, still saw the same people, the same people who would avoid me, but hey, at least I had new teachers, and they wouldn’t see me have a seizure right? wrong again. I did not have another grand-mal seizure, but I did still stare out into space and have many little complex-partial seizures. I always had that second teacher in the classroom with me, I thought it was nice because it’s another friendly face that would talk to me and help me with anything. I remember sitting outside of the classroom highlighting everything because I thought it was important. I didn’t know what to or not to highlight because I didn’t have a friend to ask, and I was too shy to ask the teacher. I tried my best to do work by myself but I couldn’t all of the time. The few friends I did have had other friends, I was friend option b, plan b, or the friend who feels like they had to be-friend me. At least this is what went on in my thirteen year-old mind. But at least I had…*thinking*…at least I had the teachers who did care if I passed or failed and did everything they could to help me get passing grades. It felt nice for them to appreciate me and want to see me have fun and succeed at the same time. Nothing crazy happened in my seventh grade world, at least in school.
The last day of seventh grade yay! I have the summer off, summer reading (blah), but at least I get to go home! Right?… On the last day in Math class, we were watching Mr. Magorium’s Wonder Emporium just when the good part was about to come up. But then the teachers phone rang, early dismissal. Yay I get to go home for the rest of the summer? No, I knew where I was going, I was going to John Hopkins Hospital to get tested. For what? I didn’t know, I think I was told but I just knew it would help somehow. So I had to get up in front of Everybody, walk across the room, disrupting the movie, eyes watching me, walk past and out the door. Why is everyone watching me? I thought I was invisible, right? But as I walked out, I felt a sense of relief because I knew I wouldn’t see them until next year. But what they didn’t know is that I would have more seizures than ever before…on purpose.
Hairspray and The Bee Movie, that’s all I watched laying in the hospital bed with a million wires attached to my head. I had many other movie options at my side, but nope, I wanted to know every detail and moment of those two movies. I also had this fancy red button I had to push whenever I felt funny. I didn’t want to press the red button because I thought I would get made fun of or ignored, so my dad had to push it for me. They told me I was going to be recorded, and they could hear everything I would say, but I didn’t see any cameras, or see a microphone, weird? But whenever I did take a ‘nap’ and ‘woke up’ the doctor would be standing right over me as I came to. He would ask me “spell World backwards”. Hesitantly I said, “d-o-r-l-w, no sorry, um d-l-r-o-w, is that right?” I really didn’t want to mess up, I didn’t want to sound stupid or act dumb. The guy in the fancy lab coat also said, “count backwards from seven” What?! First, I don’t like math, but why seven, that’s an odd number and I’m only thirteen years old, I can’t do that. But I did anyway, or at least I tried. I think I succeeded, but the final question asked by the guy scribbling fervently on a piece of paper, “Who is the current president of the United States?” First thing that came out of my mouth, “George Washington…Sorry! I mean George Bush”. I knew who the president was, but I wasn’t used to this type of attention, someone actually wanted to ask me questions and see how I was doing? Different. But with no medication in my system, I would have about three to four seizures in the day, and I had to stay there for five or six days. Least to say I was glad to be home after that and on my medication again. This test that took every ounce of energy that I had resulted in the doc’s finding my right temporal lobe was the culprit of my seizures.
Page 5: Middle School pt. 3
New school, new me. Wrong again. I went to a different school in eighth grade because it was brand-spanking-new and closer to home, Great! New people, new ways, new everything, but my seizures were not new, some of the students were not new, and even some of the teachers were not new. Great. I kind of had a new start, kind of. There was a glimmer of hope. Until I had my first seizure, again. (flashback to seventh grade –>) I was in gym class and of course it was pacer day. Running back and forth, back and forth, so. very. tiring. I did about five of them and then I had to sit down. I sat with my back against the bleachers, and I was watching one of my guy friends (yes an actual friend) run, and he was good. But I started to feel that deja vu feeling again, oh no. While I was watching him, I saw him as if he was on TV, it didn’t seem real. He looked like he was far away, or I wasn’t really there. Then the butterflies in my stomach started flying up and when it reached my throat, I was out. Kind of like no time had passed, but when I came to again, all the students were up and headed to the locker rooms. No one saw? cool. So I got up and rushed over before anyone saw that I was lagging behind. This was one of many seizures I had during my last year as a middle schooler, and of course my teachers found out I also had seizures and was clouded minded. Great. But hey, at least the guys in the fancy lab coats knew where my seizures were coming from.
My teachers knew about this supposed brain surgery I was going to have. Since the docs found out where the seizures were coming from, I suppose the only option is brain surgery. That makes sense, I think that’s the only option. If it means no more seizures, I want to do it. But I didn’t know that my teachers knew, or they would tell the whole eighth grade. What?! Why would anyone tell anyone, I thought I was safe. Dang. But the brain surgery wasn’t scheduled until June 16th, 2009, so I would be out of school. Good, I won’t see anyone’s reaction, or I won’t see them in High School, hopefully.
The last day of eighth grade, many yearbook signatures later, and one from a friend that wrote, “Hey Casey, this year has been lots of fun, and I really like the hippo in your locker. Good luck wiff your surgery. Love, Alex :)” Out of the twenty signatures in my yearbook, only one mentioned my surgery, only one voiced to me good luck. It gave me hope, it gave me a sense someone cared. Someone who saw me as a friend, and not just for the seizures I had. As I left school that day, no one knew, no one knew that I was going to have part of my brain taken out. They thought I was just going home or something. Us eighth graders don’t really know or grasp that much. But what shocked me was what I received when I came home from my surgery.
Page 6: Surgery Day! (2009)
I walk into the hospital, and *bamb* I had a seizure. I was walking with my dad with a purple pillow in my hand. I continued to walk to where the waiting room was, but then I came to, my dad didn’t notice and then I asked him, “Where’d my pillow go?” Great, I lost my pillow and had a seizure. My dad didn’t even notice I was out of it, he just wanted me to get better.
As we reached the waiting room, I wouldn’t have realized that would have been my last seizure, and the day of my surgery.
After my episode, I was in the waiting room and the first thing they do is hand me a gown and put it on. So I took the gown, but where was the bathroom? I sought where it was, found it, but as I was walking to the restroom, I felt like all eyes were on me. Even though they weren’t, I had that habit. As I was in the restroom, I put on the gown and now I looked like a sick patient with a tablecloth on as a covering. Now I looked like something was wrong with me on the outside, so people can see it. When I walked out of the restroom, my grandfather, mom, dad, and many others were waiting for me. I sat down in a chair and *snap* a picture was taken. Wait, I wasn’t ready for that. So they took another one, this time I smiled, with slouched shoulders, and with, not one, but two fancy medical bracelets on. Besides that, I was ready, or ready as anyone could be. As I walked back to the surgery room, I remember standing beside my dad, on my tiptoes looking through the door. It felt cold, silent and cold. With doctors preparing surgery stuff, and big equipment all around me. As I was about to walk in, my dad leaned over and hugged me as I was about to step in. I remember laying on the bed, with IV’s in my arm now and they told me to count backwards from 100. “ok, 100, 99, 98, 97…” I peered over to my left and saw liquid going through the IV. It was cold, and I felt it touch my sin when it entered my body. Before I knew it, I was asleep and the surgeon was touching my brain.
Page 7: No More Right Temporal Lobe For Me! (2009)
One brain surgery later, I was arising out of the anesthesia as I was being pushed to the ICU. The nurses and those pushing me were all surprised on how fast I woke up. I guess I was eager to know the result. Well I woke up, so that was a good sign. As I was laying there, one, two, three days later, nothing really had changed. I didn’t have any seizures in those days, but as I would move my head side to side, I would hear this sloshing sound. Weird. I didn’t have a water pillow or anything that I knew of. So I pushed the dreaded red button, because 1. I had to pee, and 2. I wanted to ask the nurse why I was hearing this sound. She checked, nothing was wrong. Okay. As I was laying in the hospital bed, my sister gave me her favorite stuffed animal to keep me company. Stripes was a nice white snow tiger who sat on my hospital desk. Along with a squirrel and a monkey stuffed animal friend. See, I had friends, but they were just stuffed animals. My other hobby in the hospital was making pot holders, for my mom, dad, or whoever wanted them. I had to keep myself occupied somehow. I didn’t really have any visitors at the hospital, but it was nice to have family there, even though they had to sleep on the uncomfortable stiff hospital chair. My bad. I got to lay in the propped up bed with a bunch of wires next to me, not much better. But as day five of being in the hospital was up, I could go home. I’m going home? What? You mean I can actually leave here and be okay? I had about thirty-two staples in my head, but still I get to go home.
Page 8: Yay Visitors!
The doorbell rang, weird. I was laying on the couch, still with staples in my head in the form of a question mark, and the doorbell never rings. My dad answered the door and the first voice I heard was my teacher? And a second voice was with her, and it sounded like my other teacher? It couldn’t be, why would they come over, and how’d they know where I lived? But when these two people came inside, they were my teachers and they brought gifts! *insert aww here*. At first I really didn’t want them to see me like that. I was the student who tried her best and did everything to not cause an issue. But here I was on the couch with staples in my head. And they saw it. Great. But the gifts did make me feel a little better. They had a stack of cards with them, each one from students in my eighth grade class. Students who I didn’t even know wrote to me. Made me a card saying get well, hope you feel better, etc. But I wish they told me that in person. If they knew me, if they truly cared, wouldn’t they talk to me? But that’s besides the point. The point was that people did care, they just expressed it in a different way. The teachers told the students that I was having brain surgery and that I would be in the hospital so in return the students would better understand not to make fun of people. Or at least that’s the message that they tried to get across.
As my teachers were standing beside the couch, they handed me the cards and they proceeded to talk to my parents. As the adults were having a conversation, I was reading each card made with construction paper. I tried not to show too much emotion, but I also didn’t want them to feel bad for me. After all, this brain surgery was just normal to me, I didn’t know it was out of the ordinary.
Page 9: No more Brain Surgeries! For now…
I thought the pain was done, I thought the brain stuff was behind me. But it wasn’t. I didn’t know I would have to have another surgery. Something that was life threatening. Let me backtrack a little bit…After I had the staples removed from my head that my twin sister was making me laugh as each one one pulled out because she knew it hurt me, I went home, my scar healed well, and I didn’t have anymore seizures, yay! But over the past couple days, weeks, and a month went by, I started to have this consistent headache. I didn’t cry, I wasn’t a crier (when it came to physical pain that is), so I was sitting on a chair in the family room, and I started to cry for no reason, not sobbing, but one tear, two tears, streamed down my face. I told my dad that I have a headache. Uh oh, he knew that wasn’t a good sign. This was July 2009 now, a month after my right temporal lobectomy, and I was laying down thinking it was all done. But little did I know it wasn’t. After I told my dad that my head hurt, he reassured me that I had another fun MRI scheduled in a few days. I could wait, trudge through the pain a few more days.
Thursday, July 16th came around, the day where I had to go into the big tube again, take my awesome jewelry off, and listen to this clunking going on around me. I was glad though, because maybe there will be an answer to why I had this one really long headache that never went away. One hour later, I was done with the MRI and my dad and I walked out, towards his tan minivan, I sat in the front seat (shotgun, yes). As we went over the first speed bump, my dad got a call, he took it off bluetooth and his face went from smiling to shock. “Case, we have to go to the Emergency room now.” Uh ok. Forget about going home, I’m going to the ER.
One road-trip to the hospital later, sitting in the patient-room having this hammer pound on my knee again, and Dr. Bean (yes he showed up for this surprise visit, it must be something special) checking my ears and reflexes, even he seemed concerned. It was weird, my pulse went up, my reflexes were out of whack, and I couldn’t seem to focus. Then I found out there was stuff in my head, other than my brain (or lack thereof).
Blood fluid. How could blood fluid be in my brain? I didn’t even know there was blood in people’s brains, so how was mine any different than the rest? Well mine was bleeding outside of my brain and in between my skull, so it made this little pocket of blood in my head. My brain was being pushed, forced to move, so the middle of my brain wasn’t in the middle anymore, it was more so pushed to the left. Weird. What would the next steps be now? Surgery.
The gown came on again, the nerves of the surgery room, and watching the IV fluid go in my arm, at least this wasn’t new to me. But what was new, was waiting before surgery and having the doctor tell me and my dad that they would drill two ‘tiny’ holes in my head. “Tiny” meant dime sized. I was okay with that, it’s better than two large holes in my head.
As I arose from the drilling of my skull, I was in the ICU once again and I now had two tubes in my head and red fluid coming out of the tubes. Ew, but cool. At least my headache was gone. But this hospital stay was longer than the planned brain surgery, bummer, but this place had better food, yay. I had cheese for breakfast, lunch, and dinner. Which was awesome, but not awesome for my digestive system (sorry tmi). A few boring days went by, eating, talking, sleeping, pushing the dreaded red button, when finally it was time to take the drains out.
The drains felt weird. They asked me if I wanted numbing stuff so I wouldn’t feel it, but I said no. I’m tough, I can take it. So when they pulled, it felt like they were taking more of my brain with them, like something was coming out of my head, being pulled out of me. Something one can’t describe unless experienced (which I hope you never do). But after the drain was out, I had more cool surgery scars. These two just looked like indents in my head, but still today there are little craters in my head. Hopefully after this brain surgery, I wouldn’t have another one (so I hoped).
Page 10: When life gives you lemons, try not to have a brain surgery 3 months in a row.
I admit, it wasn’t a brain surgery that happened in August 2009, but it could have been. Let me backtrack a little bit. It was that time of year again, my family and I going to our annual Outer Banks trip. I just had two brain surgeries, and recovering from all that happened, so a vacation would be nice, I just had to be careful. It’s the beach, soft sand, nice waves, how tough could that be? Well it wasn’t safe enough. Day one of the vaca went by, all good, nothing went wrong, no auras, no seizures, all good. But then day two came about, my brothers, sister and I decided to get a raft and all chill in it together. Sounds calming, safe, and secure; however, we all had to jump in it. Oh. Me being my fourteen year old self, confident and wanting no help, I jumped in and *bonk* I hit my head on my sisters head. Remember, I had to be careful, or there would be repercussions. Opps. Well it didn’t hurt too bad, it was just a slight bump right? Wrong. As our vacation went on, everything seemed fine, but when I got back to Delaware and went to my neurologist, there was a slight problem. The Docs said that I could either have another brain surgery to reduce the swelling caused in my brain, or option B, take steroids. Steroids? I thought those made people muscular. But everyone knew I didn’t want another brain surgery. I was about to start ninth grade in a month. I wanted to start fresh. So I took the steroids, and I didn’t have to get another brain surgery, but there was one issue. I looked plump. I gained some water weight, and in my school picture, it showed. But who doesn’t have a bad school picture, right?
There’s something to be said about having a fresh start; starting high school with no seizures, no sign of brain surgery, but how can it be a fresh start with a corrupt and rotted past on the inside that no one can see? I was just like everyone else now, right? Even though I didn’t have seizures, kids still passed by me, until 10th grade, I could finally see the bright side.
Page 11: The Page Turns, But It’s Not Over
Senior year, I had to pick a topic for the Senior Project. I didn’t really know what to choose, so I was thinking and thinking.
I remember listening to Matthew West for a while now, and somehow that gave me hope. The song “More” talked about someone who loved me more than the sun and the stars, that I am His? Who is this “He”? Come to find out it was Jesus, God, Holy Spirit, and I started to seek out more of this love. So with Him loving me, I really wanted to do something on Epilepsy.
But I’ve never spoken out loud about it before, so why would I make a big jump like that? People will make fun of me. But for some reason, I didn’t care anymore. So I choose to write a children’s book on epilepsy called, Pox the Penguin.
Pox came about because of what experiences I had throughout school. Pox is a penguin who shakes because he’s cold, and goes to the Polar Bear Doctor to try on hats, gloves, scarfs, etc., but nothing works. He didn’t fit in socially, but his friends and family always stood by his side. This gave him hope and encouragement. Eventually, Pox went back to the doctor and Dr. Polar-Bear gave him a purple sweater, and it worked! Pox didn’t shake anymore, and he now tells other penguins about epilepsy and that there is hope and no one is the same, but everyone is unique.
This whole idea came out of nowhere, but I had a drive, a desire, a passion inside of me that I needed to write about it. So I did. When I shared it with the three teachers on the panel, they were so impressed. One of them actually cried because she had seizures growing up and also had brain surgery! Weirdly enough, I was encouraged by this, knowing that I wasn’t the only one. She came up to me with tears in her eyes and said, “Can I give you a hug”, uhhh of course!
That is when my journey began of advocating and sharing my story with anyone who asks. Because you are not the only one and each has their own story, which matters and fits together.
I have been 10 years seizure free, since page 6 of this story, June 4, 2009. And my story is continuously being written. I know this was a lot, however, I hope you enjoyed reading it and continue to push forward and keep moving.
One lyric that I like to remind myself of is: “There’s no shadow that He can’t light up, mountain He can’t climb up, coming after me. There’s no wall that He can’t kick down, lie He won’t tear down, coming after me.” – Reckless Love, Cory Asbury.