This is the second segment of Chalyce’s story. You can read Part 1 here.
by Chalyce Sherman
After the MRI I had and we found out life changed forever. My mom learned everything about seizures and took me to my appointments. She was my rock. Same with my Grandmama. My mom was my rock for my safety and my Grandmama was my rock for my emotional side. I’m glad I had both. Without both of them, life would be different.
My mom took care of telling people. She gathered my teachers together and showed them the doctor note that stated I have epilepsy. She wanted to give them a safety plan. Which was very smart. My mom did tell me that one teacher didn’t actually believe that I had epilepsy even with the note FROM THE DOCTOR! If the teacher is reading this right now…..still have them and still not faking.
When I went to school it was horrible. Kids didn’t understand so they teased me. I don’t even know if some knew why they were teasing me. It didn’t help when I did have a grand mal, right in the middle of class. Not fun! All I remember is that we were supposed to do research on an animal. I chose the dolphin. And ended up doing research on River Dolphins. The class and I were in the the computer lab doing research and I got up to grab an encyclopedia and the next thing I knew, everyone was out of the room except the teachers. I woke up crying and the only thing I remember thinking was “OMG! I just peed my pants! Not just my pants. I peed my pants and on my friends sweater. OMG! And everyone saw me.” Then I just wanted to sleep.
My mom must have got there quick because she had everything under control. She even made sure no one called 911. She got me up into a wheelchair and made sure I was able to understand what was going on. I remember leaving school that day telling my best friend “I promise I will wash your sweater and get it back to you. I’m so sorry. I’m super sorry.” I don’t think I ever did give her that sweater back but she had told me that was fine.
After that, kids got horrible. I was just the seizure girl. I already had other issues I was trying to work out, but having something people could see was not fun. Kids made jokes about me wearing diapers because I would randomly pee my pants because of the seizures. I would be looked at weird because I wasn’t allowed to do gym, which I loved. Some kids thought I made it up so I would get special treatment.
I remember one time at school I had a complex partial and for most of lunch it was normal. I was talking to my friends enjoying my pizza. I had a fork and knife (I wanted to be fancy lol) – of course both plastic. I remember talking to my friends and the next thing I knew, my friends were saying my name over and over again and also snapping their fingers at me. It was kind of annoying especially since I had no clue what just happened. Apparently I had a complex partial (duhhh) and threw the fork I was using (jerked it actually) at the table behind us….which happened to be the “popular” table.
They told them sorry and got me a new fork. They made it seem like the only thing that happened is that I just was ignoring them. It was crazy, but I’m glad they dealt with it amazingly.
At home, it wasn’t easy either. My mom was helping try to manage it and figure out how to make me better, but on the other side I had my step dad teasing me. When I was having problems figuring out the right dose with some meds he would tease me. And it wasn’t just one time, it was all the time.
I remember I was losing my hair in clumps and super afraid I might lose it all. Instead of comforting me, he told me that when I had one strand of hair left, we could figure out which way the wind was blowing. It hurt my feelings so much. I was only 12 or 13. I felt like he didn’t care at all.
He even called me seizure girl once. Told me it was funny. I wasn’t ready for funny. It was new thing for me.
Actually, I felt like I was hated by my step dad because I was the black sheep in his white picket fence world. I had the seizures. I was costing HIM money. I wanted to be able to make the seizures go away for him for a long time. Not for me but for him so we would be a white picket fence family.
But after you take it too far, it doesn’t work. He used to tell me that I was dumb and that I wouldn’t be anything. I got punished by him because I “wasn’t listening.” Even though he knew I had seizures. If anything ever went wrong, it was my fault and I felt like it was because he just wanted me out of the family.
Well fast forward, my mom divorced him. I was so happy. I told him how much I hated him. Being teased by a guy you thought was your dad (yes, for a long time I believed he was my dad until my mom told me he wasn’t) is hard. Telling him how I really felt about him, made things amazing.
My mom finally got us out of there (my brother, her and myself), we moved to the next town over. She told the school about my seizures and had me all good. The first time at my new school that I had a seizure, I knew it was back to the way the old school was. I had a grand mal during chorus. Basically the same thing happened. I cried and freaked out a bit. I remember talking to people and then BAM! No kids in the room, the teachers are all around me, and my mom is there. I was crying and felt horrible I peed again. This time I didn’t have a friends sweater I was wearing.
I did not want to go to school ever again there because I knew what was going to happen. The kids would point, laugh, and say mean things when I got there. Well, my mom made me go back. So I went in hoping no one would say anything. They didn’t. They didn’t say one mean thing at all!
Well, I heard mean things were said but I don’t know if that is true. What I know is true is I felt so……HAPPY, to be at the new school. The kids from all groups had a rose for me. All day I had received roses. I just wanted to cry. (I was half way through 8th grade at that time). I’m pretty sure at one point I did cry. The end of the day the guidance counsellor of the school gave me a vase. The kids actually told me they were scared for me and they were happy I was okay.
I got home and told my mom. I was so happy to be apart of a school who didn’t see me as “Seizure girl” but as Chalyce the new girl. I was okay with just new girl. Then high school hit.
Again I have to pause my story here. This time its a different reason though. I’m in the hospital at the moment. They are trying to induce seizures to help me out. I’m having a Video EEG done. 4-5 days at a hospital…my doctor said it may end up being more days. It’s just getting late. Another My Journey to come. Please stay tuned.
If you would like to see what a video EEG involves, Caitie had one last year and made a video of it. You can view that here.