beneath skin deep…

It’s 2:28 AM and I’m struggling with how to begin this.

I was diagnosed with epilepsy at the age of 15. *For those of you who know me, you can skip a couple paragraphs, I’m just providing background information for context.* I woke up in the back of an ambulance some morning in late September and my life changed forever. With an oxygen mask covering most of my face and an IV stuck through the pulsing vein in my arm, I saw life for what I never thought it could be. And in one blink, I was gone again. After tests, I waited a little over a week for the confirmed diagnosis. My dad called me (as I attended a private boarding school an hour from home) and I don’t think I’ll ever forget the crack in his voice. He apologized and apologized. It’s okay, Dad. We hung up. With one spoken word, my body fell to the ground. Epilepsy. 

The following weeks were taxing. My body was furious with the toxic medicine I now drank twice a day. My stomach was in fits. Vomit. Vomit. Vomit. Red. All morning, all night. But it tamed the seizures, so it must be worth it, right? The fat began to melt from my body. I lost 10 pounds almost overnight. Not to my liking, but there wasn’t a whole lot I could do about it.  At the time, I’d kept my disability private, but it became very clear very quickly that something had changed. I began to hear whispers… girls calling me anorexic, shaming me for working out, saying I was much too thin. These whispers quickly turned to screams in my head. Word vomit spewed from my mouth. I’m epileptic. My medicine is causing me to lose weight. Suddenly, the whispers turned to audible prayers and apologies. But it wasn’t their fault.

My doctor stacked papers, magazines, articles, and studies in front of me. My new world consisted of higher depression rates, higher suicide rates, higher anxiety rates. But I would be okay, I was going to be okay. Still, it was undeniable that suicide rates for epileptics are 10x higher than the average person. Somewhere between 20-50% of epileptics are depressed and anxiety averages between 10-20%. I was overwhelmed with precautions and outlets. I was going to be okay. My life wouldn’t change unless I let it. But I suppose in retrospect it was a bit naive to think that way.

I went about my life for two years without having another grand mal seizure. But I had my days. I had mornings where my hands would shake so severely that I couldn’t function. I couldn’t get ready for school the way I’d like to, but I always made it anyway. I was going to be okay. I had my ways of distraction. I’d have seizures daily but I’d doodle or write or talk excessively. I’d get through it one way or another. I suppose I was good at hiding what was eating my insides alive. I was my best version of “normal.” I threw up every single morning. I took my medicine, I threw up, I tried my best to put on some makeup, and I went to school. I went every single time. The tears in my eyes would dry by the time I made it into school and I could slap a smile across my face. School was better than an ambulance, anyway. Another good day, another day I was okay.

My life became a battle of mornings. If I made it past the morning, I was going to be okay. I was okay, but I was not good. I had seizures every single day, probably every hour. But I was conscious and I was breathing and I was okay.

Two years later, epilepsy came back to tell me I was not invincible. A brief reminder, a knock on the door… one I’d rather not answer. Someone I’d rather not invite in, but it busted through anyway.

My hands shook excessively, my mind began to spin. I was dizzied and confused. Lost and numb. I called my mom. I knew.

My parents came and I was still conscious when they arrived. I thought maybe I was okay this time… but I was wrong. Mid conversation I lost myself. I blacked out. I fell apart. My mind caught on fire, it’d had enough. My body no longer belonged to me. I was in the hands of epilepsy. And epilepsy was not kind to me.. this time it was particularly unkind. I stopped breathing and I turned blue and purple. I was so stiff, too stiff. My body gave up and it gave up for too long. It almost gave up on me. My dad picked me up and I breathed.

I still think he is my angel. If not for him, I don’t know that I’d be here.

Again, I woke up in an ambulance. Not again.

I blacked out again. I woke up in a hospital again.

I was released and I went home.

This seizure did particular damage to my tongue and my jaw. My body is permanently scarred from that one. A constant reminder lingers within the damage done to my jaw. It constantly cracks and my teeth are no longer aligned the way they once were. But I am still here. And I am still okay.

The next year of my life is spent in and out of hospitals… in ERs, ICUs, and Neurology Units. Anywhere, everywhere but where I wanted to be. With needles, in wheelchairs, in MRIs, with new medicines. I thought hell was waking up in the back of an ambulance but this proved me wrong. Epilepsy laughed in my face. You are not invincible, Emma. You are a poster child for what seizures are and the storm they create.

These were the first months that I truly struggled. I was in college, away from home through it all. This was the first time anxiety attempted to strip the last of me. My legs felt like jello and my heart would race. My eyes would cross and my vision would blur. I would sweat. I would cry. I was still throwing up every single morning. Throwing up stomach acid most mornings and my god did it burn. I struggled with my speech and my memory, thanks to my seizures and medication. I lost my confidence… I lost my sense of self. I had hit a new low. My brain filled with fear of not being loved or accepted… not finding happiness. I couldn’t live that way anymore. Life had to get better, it had to.

So I was placed in a hospital to change my medicine and I went through withdrawals from my old medicine. I went through the stomach pains, headaches, tremors, sweats… the whole nine. It was as miserable as you could imagine.

I couldn’t walk without paging my nurses for assistance. I got shots in my stomach daily. I was pumped with fluids. I was sick. I was strapped to a machine that kept track of my brain waves. I had strobe lights flashed in my face to get a reaction. I cried. I couldn’t shower. I really couldn’t do much of anything. My mom washed my body with a washcloth. And my dad sat by my bed and let me order shoes. I had nowhere to go but I would one day.

I was 19.

But I got new medicine and I felt better. I took care of myself and I felt better. I was okay. I knew it. I knew I would be.

Fast forward to now.

Last year was tough. An additional medication was added to what I already took and it made me worse. I was constantly anxious. I was constantly crying. Fear crept into my brain more prominently than it had before. I was afraid the ball would drop. Afraid I’d been so fine that it was my turn not to be. This new medicine made everything dark. My outlook on everything was dark. I was the most unhappy and the most anxious I’d ever been. I couldn’t go to class without vomiting. I cried. I sat in my room alone and I cried.

I went off the medication and I was better.

Today, I am a product of all of those experiences and many more dances with epilepsy that I didn’t detail in this. I break down. I cry. I cry so hard that my eyes are swollen when I wake up. I want to be alone. I want to fall apart. It makes me feel alive. It’s cathartic. I can finally drop my walls and admit life sucks sometimes. And I think that’s important.

But I also laugh and I love. I love so hard. I am okay. I am happy. I leave my house and I have a job and I go to school and I am okay. But sometimes it’s all too much. Sometimes it swallows me whole. Sometimes I curse out whatever higher power is out there. Sometimes I’m so mad it happened to me. Sometimes I’m not okay. But that’s okay. I struggle with my health and I struggle with the person that I am because of it. I struggle with things I can’t do and experiences I can’t have. I struggle with things that were taken away from me. I struggle because it’s so hard. I struggle because I’m human. I struggle and maybe you can’t understand.

That brings me to the point of this entire piece of writing.

I am not the skin the covers my bones.

I am not the clothes that drape over my body.

I have struggled, I still struggle.

And I suppose it’s redundant and it should go without saying…

“everyone has their own struggle.”

But how quickly people forget that.

Not every struggle is visible.

I have dealt with my fair share of ignorance and in most cases I tolerate it well. At least I think I do. But don’t you dare mock what I’ve been through. Don’t question what my life has been up until this point.

I can’t wear the pain I’ve felt on my sleeves.

I can’t live like that.

For the love of God, stop expecting that people are okay all the time because they smile and laugh. Because they’re doing their best to be happy. Stop. Stop belittling an entire disability because someone seems okay or looks okay. It is absolutely shameful to think you can spit your thoughts out on how my appearance somehow correlates to how I feel. It’s ignorant and insulting to speak on something you’ve never in your life experienced. Am I supposed to live in permanent hell to prove to you that I’m sick? Would that permit me to have bad days? Would you believe me if I cried right in front of you, drowning us both in saltwater? Would my bad days be acceptable if you saw what just one day in the hospital looked like for me?

I smile and I live. I dance at bars and I sing karaoke with my friends. I flirt with boys and I keep my conversations light. I write and I write about the darkness. About love. The light. Everything in-between.  I am proud of who I am and what I am.

I am epileptic and I’m so proud to say that.

My life has been a mess of tears and blood and tests and anger and helplessness.

But it’s also been so much more beautiful than you could imagine.

I am okay, but I am also allowed not to be.

Still, pain floods my eyes and tears drown my skin. But you are not the judge of when that should happen, how that should happen, or if that happens.

 

 

 

 

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