Let's set the stage: I was 13 years old. My dad had passed away from cancer two months prior and I had recently gotten a bad concussion from being kicked in the head by a galloping horse. Ouch. It was the first night that my mom had left me and my sister alone since he died, though we did have her friend staying with us. My sister and I shared a small room and our beds were rickety and touched. It was around 5 a.m. when she woke up from the shaking. At first she thought I was just moving around restlessly, but when I didn't respond to her frantic calls, she knew something was wrong. At some point I came to and noticed blood on my pillow and a foggy sense of commotion around me. I remember the ambulance sirens but not the ride. Not the hospital bed. Not the moment that I was diagnosed with Grand Mal seizures and an epilepsy disorder.
I had all the tests done. The CAT scan, the MRI, the EEG. I hated them the most. Even now, I hate the feeling of trying to resist a seizure from the flashing lights while you're in a state of half consciousness. My mom found the best pediatric neurologist and she told us that, based on the scans, I had actually had seizures before this one.
The doctor put me on Topamax, which kept them at bay for over a year. When I was 16 and had gone a year without any seizures, I went off my medication. But a year later, another one hit. I was 17 and on a mission trip with my church. I was on the top bunk and my best friend was on the bottom. She woke to the sound of my body hitting the concrete floor. Luckily, I fell with my pillow in my arms under my head, but continued to seize. She, and everyone else in the room, already knew I had epilepsy, so she knew what to do and what not to do. Someone ran and got my youth pastor, who then called my mom. I remember riding in the elevator with them both and just laughing hysterically. I was still at a time where it took me a long time to recover from them. So I went back on meds, but this time Lamictal.
I graduated high school and went off to college, where I obviously couldn't resist pulling all nighters in the library after procrastinating and drinking with all my best friends. I'm honestly shocked I didn't have more during this time, and I very well could have in my sleep. I even had one in New Zealand while I was studying abroad. I had six seizures, or at least six that we know of for sure. Like I said, who knows what happens at night.
The morning of my college graduation I had one while I was by myself. All my roommates had already left to meet up with our friends and drink mimosas before the ceremony, but I was taking my time. One moment I was walking down the hallway and then next I found myself slumped across a chair with my arm throbbing. I had a sharp headache and was groggy. I pieced it together: during the seizure I fell and landed on the arm on the chair, resulting in a nasty bruise. It was probably one of the worst times to have a seizure, but from what I can remember, it was still a great day.
With each seizure, I got better at being able to tell when they might happen, though sometimes it still comes out of nowhere. I got better at knowing what happened. ("Did I just have a seizure?" is my go-to question.) In some ways I got better at recovering from them, but in other ways not so much. I found that I became less and less disoriented and knew where I was and what was going on almost right away. But I also found that my memory was getting worse and worse. And that my words would get jumbled sometimes. One of my grandmas had dementia and the other had Alzeimers, so the idea that the seizure may be messing with my memory terrified me.
I became a teacher and had two at school, back-to-back. I have always been very open with the people in my life, and it is often one of the first things I tell people. My colleagues, housemates, friends. I tell them I have it but it is relatively controlled and what to do if I were to have one in front of them. If I have any advice for people with epilepsy, it is to do this. Then it just becomes another part of who you are. It also helps people realize that it is not some crazy thing. Like my allergies and my skin problems, it's just a Melanie thing. Each school year, I tell my kids I have epilepsy. One, so they know what to do if I were to have one; two, so they are not absolutely horrified if I were to have one in front of them; and three, if I miss school, it won't need a long explanation. Just that Melanie had another seizure and needs to take it chill.
During the Woolsey Fire in California, my housemates and I had to evacuate to my mom's house. We stayed up all night watching the news and the stress and lack of sleep got to me. In the morning I was making breakfast for us when my mom noticed I had "spaced out," which is almost always the first sign of an oncoming seizure. At that point, I was moments from going fully dark. But she yelled my name and it somehow pulled me out of it. Because of that, my boyfriend and friends always yell at me when I stare at something for too long or don't respond right away, which is hilarious and annoying at the same time.
My last seizure was back in November. I was tutoring a student I've worked with for over four years, who of course knew my history. I was reading to her on the couch and the next thing I knew her mom was there next to me petting my head and telling me I am loved. "Did I have a seizure?"
Me and epilepsy have a weird relationship. I get terrified of not getting enough sleep. I don't drink often any more. I can't take sickness medication because it could trigger one, so I'm scared of getting sick. I can't go to concerts where there might be flashing lights. I even struggle driving down tree-lined streets when the sun is passing through them because it creates a strobe effect. Things that no one else thinks about, I worry about all the time. But it is such a huge part of my life and who I am as a person. It has taught me resilience and perseverance. It has taught me that people love me and care for me.
All of my closest people have experienced them. My best friends, my boyfriends, my mom and sister, my colleagues. It would be so easy to fall apart after each seizure, and sometimes it's hard not to. But I still go rock climbing and surfing. I go hiking and backpacking. I travel and adventure. Yes, I am sometimes afraid to drive and sometimes I have to close my eyes tight and put a blanket over my head if flashing lights are on TV. But it could be a lot worse. It is a part of me and I have learned to embrace it as such.
My message to everyone who is struggling with epilepsy: don't be afraid to tell people. When I share it with my middle schoolers, at first they look shocked. But after I tell them about it, they're like "Oh, ok. Cool." And we move on. People, the kinds you want around, they won't think you're weird. They will only care and do everything in their power to help you live your best life. I guarantee it. They will drive you places when you can't. They will warn you when there is the faintest flickering of lights. They will keep an eye on you if you're taking risks, the good risks and the bad. They'll even get excited when they meet other people with epilepsy and want to share it right away. And the more you talk about it and tell people, the more comfortable you become with it and the more comfortable others are too.