A Lightning Bolt Through the Mold
Self-Acceptance, Epilepsy, and Thunderstorms
I have always been fascinated by thunderstorms. Their sheer size and uncontrolled raw power stands as a spectacle for all to endure. It was around the time that I was diagnosed with epilepsy that I realized just how much of a connection I had with thunderstorms, and particularly lightning. From what I had been told, the synapses in my brain were not functioning correctly. They were unpredictable much in the same way that lightning was. My brain was like a lightning storm and I took comfort in that.
First came the spine. When I was in middle school everyone was taken aside from usual classes and tested for scoliosis. It turned out that in giving in to popularity and using only one strap of my 40 pound backpack, I had developed scoliosis. Why 40 pounds? I wasn’t very good at keeping up with classwork like everyone else, so that meant lugging 3 textbooks home every night. Going to a chiropractor became a big part of my late childhood. I mostly kept quiet about my back, so that it became more of an internalized feeling of not belonging. My family wanted to do everything they could to help, but it just made me feel like I wasn’t even normal at home.
Then came the epilepsy. When I was 14 I started having these weird twitches. I’d drop my comb in the morning, or drop the shampoo in the shower, or drop a glass of water… a lot of dropping things. My body would go completely limp for a tiny fraction of a second and I would pick up on it and subconsciously overcorrect. The doctors called it Juvenile Myoclonic Epilepsy. Practically a symptom of a symptom of epilepsy. The seizures, or more accurately, twitches that I had would surface when I was sleep deprived or stressed out, and cause me to drop small objects. My internal feeling of being wrong grew even more.
Towards the end of high school and into college I got heavily involved in fantasy live action role play. I developed a character that represented how I felt, with electricity being her strong suit. Aravis: a half-elf ranger with lightning powers. It started as just a role I took on in Central Park on Saturdays, but her identity stuck. I started drawing her. I designed a costume for her. I created her in every video game I could. My friends introduced me to Dungeons & Dragons, and she became the first character I played as. She was goofy, skilled, and loved to learn. She had allies, goals, and was always ready for the next challenge. Her greatest obstacle was mastering her own abilities. I could see her; the fantasy version of myself.
I began to write. Hundreds of pages of ideas and notes filled my bookshelves and hard drives. Screenplays, numerous tv pilots, character breakdowns, psychological analyses, maps, sketches, potential timelines all got promptly vomited into my stores over the course of five years. There is an arsenal of ideas inside me for the tale of my alternate self. A magically powerful hero whom I can learn and grow with, and pull strength from when I’m at my lowest.
Aravis. Her enemies threaten nature and its peaceful inhabitants. However, lightning is not an easy element to control. It’s wild and unpredictable, and must be used carefully to avoid serious consequences.
I got pretty lucky in that my case of epilepsy is extremely mild. Typically people who witness me having a twitch will ask if I’m okay. I’ll explain that it’s JME, and they’ll awkwardly accept it and just try and ignore any more that I have, albeit, uncomfortably. It’s pretty rare that I’m asked about what it’s like having seizures. Movies and TV make them out to be big scary things that no one can do anything about. We’re told to just keep the person isolated and out of harm’s way until the seizure is over. I have been asked: do they hurt? Not the seizure itself, no. Do things smell, taste, look, or sound different? How does it feel?
To the average onlooker, I just spasm really quick, sort of how you do when you get a chill. Nothing terribly noticeable, unless I happen to be holding something and drop it or make a strange, sudden movement you wouldn’t expect. Inside though, it feels like falling. I lose control for the smallest bit of time you can imagine, but it’s like I’m shifting through planes of existence. Time slows down, I’m dreaming for a moment. Everything is dark and peaceful if my eyes are closed, and if they’re open things just kind of melt together and go out of focus. Everything stops and I can relax. Then I open my eyes or refocus and regain control. Time is still slowed, but it’s speeding back up. I have to correct my sudden system failure. Flex the legs, flex the arms, hell, just flex everything! Catch yourself, regain balance. Get a grip on whatever you’re holding. Is it falling? Hurry! Catch it! Don’t let it break! Don’t spill it! Don’t scribble all over the page! Don’t ruin your drawing! Don’t look weird to other people! Don’t make them think something’s wrong with you!
People are typically the afterthought, but still not fun to think about. Once time has picked back up, I deal with whatever mess I’ve made and apologize to those around me. Often times I won’t know them, and they won’t know me or that I have JME, so to the best of my knowledge they just assume I’m clumsy. Labels suck, and so does scaring people.
Aravis’ journey over the course of her story is learning to control her powers and discovering the importance of responsibility in regard to their use. Through an understanding of herself, she will develop her abilities and restore balance to the rest of the world. Like Aravis, I am learning about myself and how to live with epilepsy.
I have journeyed through nearly a decade, taking various pills and holistic medicine. Many of them came with nasty side effects, and none of them made much of a difference. My scoliosis persists, and I’m beginning to believe that my spinal cord may actually be the key. Western medicine encourages all sorts of pills they can charge an arm and a leg for, but don’t typically support chiropractic care. The “cure” for me could very well come from the part of my body that got screwed up in the first place. I do what I can to remedy my back. I have yet to see if my efforts will yield any results, so I carry on with life.
When I do have twitches and feel unbalanced, I think of Aravis. I find my center. I think of her when life gets too stressful. She reminds me that life is a game and to have fun. I think of her when I feel I’ve reached my physical limit and she pushes me to go just a little bit further.
Because she could do it.
I could do it.
I can do it.
I draw my power from the storm. The lightning crackles and gets released as pure energy.
I turned my weakness into a magical ability, and now I take pride in not being normal.
I’ve learned to control my “powers” by doing my best to get enough sleep, steer clear of stress, and actually eat a little breakfast instead of holding out ’til lunch. I take showers at night instead of right after I wake up. I make sure I’m wide awake so that I don’t rupture my eardrum with a q-tip (not fun). I listen to my body and sense what it needs in order to function semi-normally. I’ve become more perceptive. And I know that if I have a twitch it’s not the end of the world. They’re going to happen, and that’s okay. Accepting that is the biggest hurdle of all.
I still face challenges. People say that I should fix myself. That having seizures is not normal and my life would be better without them. That may be true but I have accepted them as part of myself. Life is so much bigger than a disability or disorder. I have tried and continue to try spinal correction and natural medicines like CBD, but I do it to better my health, not necessarily for the goal of being seizure-free. One day I may no longer have seizures but I will be glad that I did because they helped me give life to the character I’ve felt more connected to than any other.
What is it that you don’t want to face? Identify that thing that you don’t want to think about. You know what it is. Think about it. Focus on it. And find something about it that inspires you, no matter how small. Make a connection. And turn it into the greatest form of yourself. Now you need only use it.
Break the mold with a bolt of individuality.