Living with Epilepsy

They began happening when I was twelve. I had four the last month of school alone. I missed half of the last month of school. My teachers let me turn in as much homework as I could during that time. I’d somehow managed to finish all of my homework on time anyway. I’d do it all at once and sleep the rest of the time. I had trouble focusing during school. I knew adjustments would be made. To say my life was forever changed is an understatement. I was scared about the upcoming appointment. Along with my future. 

“I know you’re nervous. It’ll be fine” mom said
“I know. I’m just worried-” I began
“We’ll worry when we need to” she replied
“Okay mom” being the only response I could manage to say

My first Neurologist appointment in St. Pete happened the week after school ended. I wasn’t sure what to expect. I wasn’t sure what to do with my life moving forward. I asked all the questions I could think of. All of which were answered in a way I knew would help me adjust to my new normal. Dr. Cassius was an amazing Neurologist. I knew that from the start. For him to answer everything the way he did helped my anxiety. It lessened my fears. His reassurance that my life could still be relatively normal was helpful. Far more than anyone realized. 

“We’re going to figure this out together” Dr. Cassius said
“I’m scared, worried. My sister has been more scared-” I’d begun
“I know. That’s okay. You’ll find a way” he replied
“We’ll figure out a plan when we get home” mom said
“I already have some ideas” I said
“Why am I not surprised? Write all of it down when we get home” she said

What I hadn’t said was that I already had written it down. I’d kept detailed accounts of everything. The ideas swirling around in my head were things I knew I could do with my new normal. Things that would possibly reduce the risk of me having a seizure. I knew all of the testing would help in some way. I noticed patterns on the days I had seizures. Adjustments that could be made based on those patterns. Each seizure replayed in my mind on the way home. All the minor details I’d written down by the time I got home. 

“I don’t know how I’m gonna-” I began
“I know it’s hard right now. She did things differently that was helping you” Adam pointed out
“Yeah, it’s just that Shiloh-” I started saying 
“You can help Shiloh understand everything like you’ve been doing” Adam said
“As scared as I am I’ll figure it out” I replied
“Yeah. You’ve got a lot of help also” he smiled 

Mom’s unexpected death shocked everyone. It broke me. It was a few mere months after the seizures began. It was a month after my thirteenth birthday. I was spiraling into a state of mind that left me unsure of my future. I didn’t know what was going to happen next. I was scared far more than before. I kept hoping I wouldn’t have a seizure from all the stress. I’d let out all of my emotions through my Poetry. It was one of the few things that was helping me. A semblance of normalcy that helped me as well. 
 
“How are we going to-” Shiloh began
“I don’t know. We’re going to figure it out. Together” I replied
“I’m scared” she cried
“I am too. We’re going to be okay. We’re in this together” I said with tears in my eyes 
“I wish she didn’t die” she sobbed
“Me too. Everyone feels the same way. She’s still with us. Just in a different way” being the only response I could say

Two years had passed since her death. I knew it was a matter of time before dad asked me about driving. I’d already made my decision. I wasn’t about to take that risk. I didn’t want to get into an accident because of having a seizure behind the wheel. I didn’t want to kill myself or someone else because of that. It was a grown up decision for me. I knew that from the start. I knew I’d likely be with someone else the majority of the time anyway. Along with public transportation. There were plenty of other options after all. 

“Are you sure you don’t want to drive” dad asked
“Positive. That’s a risk I’m not willing to take. I don’t want to have a seizure behind the wheel and kill myself or someone else” I replied
“I never thought about that” dad said
“Of course you didn’t. It’s not something you’ve ever had to think about. I HAVE to” I answered 

I knew everything else I said during that conversation were things he hadn’t thought about. It wasn’t something most people thought about. They didn’t have to worry about what I had to worry about. I even went through scenarios he hadn’t realized were a possibility either. I’d thought about everything possible when I thought about driving. The risks outweighed everything else. I knew others would ask. I was prepared. I knew my family would interrogate me. I had a plan for that as well. I knew they’d never understand. They never really bothered to connect with me to begin with. 

“Honey, are you sure-” Aunt Maggie began
“YES, I’m positive. Were you even listening to what I just said? It’s just NOT safe for me to drive. I’d rather NOT kill myself or anyone else just because I got behind the wheel. Please respect that” I sternly replied
“I understand that, but-” she retorted
“IT’S NOT UP FOR DISCUSSION. My decision is final. You don’t have to like it. You do need to respect it” I answered
“What about having kids?” She asked
“That’s not happening either. Same concept. I don’t want to have a seizure while pregnant and end up not making it for whatever reason. My out of whack hormones when I’m on my period are hard enough on me. The pregnancy hormones would be far worse for me. I also don’t want to have to teach them from a young age on what to do if I were to have a seizure. I’m just not willing to through any of that” being my only response

Everyone, aside from dad and my grandmother of course, was shocked by my answers. They were shocked that I responded the way I did. I explained everything in more detail after that. I explained things the way mom would’ve. I was happy I handled everything the way I did. Their actions spoke loudly though. I didn’t know if I wanted them to be in my life anymore because of their actions speaking for them. I knew I was going to live my life as normally as I could. With or without them. I’d found ways to reduce any risks. Living with Epilepsy is unpredictable though. Even as a 15 year old. I had people, Dr. Cassius included, that helped me figure things out. I saw just how normal my life could be.