Before my epilepsy diagnosis, I loved thunderstorms but now they have me terrified. Lightning was beautiful. Thunder was calming. Wind was refreshing. Rain was peaceful. Until it wasn’t… Now I can never escape thunderstorms because one called epilepsy decided to stick around inside my brain.
Every misfiring neuron feels like lightning striking my brain. It is feeling a seizing coming but being unable to prevent it so I must wait for the inevitable- blacking out.
Every rumble of thunder is the slightest bit of overstimulation that sends me into a seizure. It is the overwhelming pain that comes along before, during, and after every episode.
Every gust of wind sweeps up my thoughts leaving behind memory loss and confusion. It is returning to consciousness following a seizure unsure of where I am or who the people around me are.
Every raindrop like a seizure drowns out the rest of the world surrendering me helpless with no cover to run towards. It is losing control of my body leaving me frozen unable to speak but still fully aware of my surroundings.
Those aren’t even the scariest parts of the storm. No, the scariest part of the storm is the fact that I am thirteen months post-diagnosis and today is no less difficult than day one. I have no more control today than I did thirteen months ago. And tried to control this I have- mostly I have fought to control what parts of this storm others see. Before epilepsy, I had good control over my health conditions and rarely ever needed help in managing them, so the only people who witnessed the personal details of my fight was my family. I quickly realized epilepsy does not give me an option of protecting my support system from the fears I was experiencing because a storm can and will happen at any time or place and often for no reason at all.
There is a moment from about a month and a half following my diagnosis that consistently plays in my head. Usually, I don’t remember my most horrible moments but this day I remembered everything which caused me to hit a breaking point because I finally recognized the harrowing damage this storm burdens others with. On this day, while I was being driven home from school by a friend I had a seizure in that friend’s car. This was not the first time she watched me have a seizure, but on this day the lasting effects of the seizure were some of the worst I had experienced. As we parked at my home I remember returning to consciousness in a great deal of pain, so I stayed in the car while my friend went inside to grab my mom. When my mom came out I tried to get out of the car but at that point, the pain was so bad I could barely walk. My friend witnessed my mom practically carry me inside while I cried out in pain with every step. This friend looked like she was about to cry as she was forced to watch me endure the worst of this storm. One I couldn’t protect her from. I felt so guilty for placing that burden on her. She called me brave that day but I hope she knows how brave I thought she was. She didn’t tell me, but like myself, I know she was feeling helpless and scared. Very few people are prepared for a thunderstorm like this and even though she was ill-prepared she never ran at the sounds of thunder and that is bravery.
Maybe one day I will find thunderstorms beautiful again but right now I want nothing more than for this thunderstorm to end so that neither of us has to feel scared again.