Epilepsy

One of the hardest things to deal with in life is living with a medical disorder, especially when it is one that so few people try to understand, like epilepsy.

People hear the word epilepsy and they freak out! They get scared. They either think that you're possessed when they witness you having a seizure or they think that you're daydreaming the day away. They don't understand what's going on with your brain, they don't understand why your body is jerking about, they don't understand that there is nothing that you can do to stop it. What's even worse? They don't even attempt to understand it!

When the seizure is over you're exhausted from your body and brain fighting. You're secretly wishing that you hadn't woken up. You're internally torturing yourself with negative thoughts because of the looks that people are giving you or the dumb comments that people say after witnessing an episode. You wish that you were invisible. You wish that you could crawl underneath a rock and hide. You wish that you could just go to sleep for a week so that your body could recharge. People look at you funny because your incoherent due to biting your tongue and slurred words. They look at you funny because you can't stand up or walk right. They look at you funny because they don't understand the Hell that your brain just put you through. They look at you like you're lazy when in reality, you are just so very tired of it all.

All medical disorders are tough. They each have their terrible side, but I personally think that the lack of knowledge around epilepsy is one of the biggest issues with this disorder. So few people understand it and that alone is a tragedy.

I hate my epilepsy. I curse it on a daily basis. It makes me feel weak. It makes me feel incomplete. It makes me feel abnormal. It makes me feel vulnerable. It makes me feel negative on SO many levels. Not long ago I was in the EMU (Epilepsy Monitor Unit) for eight days. Why? Because my epilepsy had kicked into overdrive. I was back to having seizures daily again, but not only that, I was having them multiple times a day. It got so bad that I had to sleep upstairs and be monitored twenty-four seven by my family. I couldn't stand or walk, I could barely talk, I slept and seized and slept and seized and slept and seized for a full week. There were moments that I had never witnessed before, it was like an out of body experience where I was watching my arms thrash around. I literally threw the trash can that I had been holding in my arms (I had slept with it on the couch with me due to throwing up with each episode) across the living room. I could see my mom, I could feel the tears streaming down my cheek and I think I even managed to say "why"... Finally I got into the EMU and it didn't matter how many stress test they put me through or how sleep deprived that I was, my seizures refused to come until finally on day 8 at the hospital I had a small 22 second one. How crazy is it that I go a full week having them back to back, but then when I NEED them to happen, they refuse! I ended up doing my EMU stay two hours away from home and of course I had told my family not to bring my daughter because I didn't want her seeing me with wires wrapped and taped all over my head so I ended up spending Mothers Day and week alone. Ouch.

I have had epilepsy for over twenty-five years and every time that I think it's getting better, it laughs at me and proves that it's not. I remember being SO angry back in July because of my epilepsy. I had gone a few months without seizing and randomly one night I decided my goal was going to be going one year seizure free so that I could get my learners permit. I got out a piece of paper and a pen, I titled it "Month's Seizure Free" and I wrote down how many months it had already been, I wrote down my goal and which month I would finally hit that one year goal and then I taped it to my door so that I could see it every morning and use it as motivation. I went to sleep just like any other night, but then the morning came... I woke up and felt fine, I saw that paper taped to my door and smiled because I was going to be one day closer to my goal. I went upstairs to wake my daughter up for school and begin our day. BAM. It hit me. Goal tossed out the window in the blink of an eye.

From there things only got worse. They're better now, but after having epilepsy for over twenty years, I know that I can't get too comfortable with where I'm at otherwise my brain will decide to go haywire on me and laugh at me. I always feel like it's taunting me. Unlike many others with epilepsy, my body is medically resistant to medicine. I also can't have brain surgery due to the fact that my seizures come from multiple parts of my brain. Lucky me. NOT.

People without epilepsy don't understand that it's an internal battle. They don't understand that it's an invisible disorder. They don't understand what it's like to have your child watch you seize. They don't understand what it's like to hear your daughter say "No mom, we can't watch this because there's flashing lights. I'll pick a different movie so that you don't have a seizure." They don't understand the amount of embarrassment that comes with waking up on the bathroom floor, with a towel draped over your naked body as your mother and grandmother stand over you. They don't understand the pounding headache that you have from pounding a hole into the wall which is how your grandma and mother knew that you were seizing.

They don't understand what it's like to wake up to your boss and the father of your unborn child standing over you and demanding that you be rushed to the hospital because you fell onto your stomach during your seizure and possibly injured your baby. They don't understand how alone and isolated they make us feel simply by looking at us like we're some freakish alien. They don't understand how much it hurts to lose their friendship or a relationship simply because they weren't strong enough to deal with our seizure. They can't even begin to grasp the fear that you feel before bed every night because you're worried that you'll seize in your sleep and no one will hear you. No one will know that it happened. No one will know if you bit off your tongue and swallowed it. No one will know until morning when you don't climb up those stairs or answers those phone calls or text.. They don't understand the embarrassment that comes with losing all control over your bodily functions and having an accident. They just don't get it.

I get so incredibly jealous (to the point of feeling guilty over my jealousy) at my siblings and friends. They can drive, they own houses and cars, they tell me that I'm lucky that I don't drive because it's one less bill to pay for, but in reality they are the lucky ones because they don't have to rely on others for transportation. They don't have to work around other peoples schedules so that they can figure out who can take them where and when. It's a hassle and it's embarrassing and honestly A LOT of the time it makes me feel useless and pathetic even though I know that I'm not. I had one friend tell me that I should try CBD treatment, I was neither for it nor against it since I haven't done much research on it, but I was grateful that he was trying to help me come up with a solution until he said... "I know how much you want to be normal." and hearing those words pierced my heart. It hurt. It hurt on a level that I didn't understand. He hadn't meant it in the way that it had sounded, but it had still hurt.

A normal life is a boring one, you should already know that if you're a fan of Halloween Town :) It's slightly overrated, but it's something that I often wish that I had. I don't have a "normal" life though and I have to live with that, but it's okay. It took a lot of time, but I finally stopped feeling sorry for myself. I finally realized that the people that left me just didn't deserve me. They were a waste of my time. It's not the quantity of people that you have in your life, its the quality. As long as you have a few good family members and close friends, you're golden. As long as you have some sort of roof over your head, you're golden. As long as you have breath in your body, you are golden.

There are so many medical conditions out there that people just don't understand. Educate yourself before you judge. That is all that I ask. And if you are one of those beings with a medical condition, I ask that you spread awareness on your condition. Share your story. Share your experiences. Help raise awareness in the world.