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.

 

 

 

 

a piece of me

Moving memories of my childhood projected on the screen, in the dark theatre underneath of my shut eyelids.  Tears rolled down my cheeks.   My soul had left my body and I was floating above myself.  I felt myself live as I ran through my house playing dodgeball with my dad and brothers.  I saw myself grow as images of princess dresses turned into prom gowns.  I smelled the Green Tea perfume that I used from my mom when I was younger because I wanted to be just like her.  I touched the rainwater that used to flood the backstreet of my neighborhood.  I heard myself laugh as my dad chased me around my house with underwear on his head.  I saw faces I hadn’t seen in years; memories I hadn’t thought of.  I realized the infinitesimal, lackluster memories shined simply because I was alive.

It was the surreal moment that’s described by living people who try to make sense of death.  It was the moment before you enter heaven.  Life rushed through my veins before my heart would beat for it’s last time. 

But then I breathed.

It was a beautiful, snowy February night.  My eyes were on the road, while my mind was on him.  My boyfriend of only four months, Mo, road shotgun.  We were celebrating Valentine’s Day with dinner and a movie, as teenagers did.  Suddenly, I noticed the snowfall began to strain my eyes as it gleamed against the black of night and the vividly pronounced headlights of oncoming traffic.  Mid-sentence my mind went blank.  I felt as though I was on the edge, unsure of what that edge was.  Unaware if I was as visibly shook on the outside as I felt on the inside, I whispered, “something’s wrong, I need to pull over.”  I found myself on the side of I-70.  “Born to Die” quietly played beneath the panicked dialogue between my boyfriend and I.  After a brief discussion of what to do or who to call, he took the driver’s seat.  As a recent resident to West Virginia, coming from Germany, he had limited knowledge of his surroundings and he didn’t have a driver’s license.  But he was all I had.

Over the course of the drive, the severity of my confusion and vertigo had subsided.  By the time we had arrived at my dorm, my coordination had somewhat improved.  We came to the agreement that we wouldn’t let on that anything unusual had happened.  I wasn’t feeling up to explaining to his parents that I had just forced him to do something totally illegal, nor was I interested in talking about how I was feeling.  Fearful that my mini-emergency would ruin Valentine’s Day further, I held my panic in. 

We spent that Valentine’s Day confined in the comfort of his room.  He spent the night next to me.  I spent the night inside my mind. 

A week later, I experienced the same aura when I was at school with Mo.  Again, a shock electrocuted my spine.  I told him I’d be right back.  That was the biggest lie I’d ever told, and I knew that…  I think he knew so too.  Sweat cascaded out of every pore in my body.  I knew it was happening again; the unknown.  My feet carried my body to the comforting seclusion of a bathroom stall.  The late bell rang, causing me to naively exit my safe haven in order to make it to class.  I took five steps and hit the bathroom floor.  I would lay there until I was found by my friend, Sarah.

“Emma, stay with me,” repeatedly left the nurse’s lips.  I was picked up and carried into an office. I found safety inside of those four dull walls. But finger’s touching computer keys were deafening. Every ray of light, every sound… it was all overwhelming, all too much.  I covered my ears. I took off my shirt.  I covered my eyes.  I was sweaty.  I threw up too much for the trashcan I was handed. I was aware of my surroundings to an extent, but it hurt significantly less to lay there in silence.  I had quickly become a prisoner of my mind; capable of seeing, incapable of forming a coherent sentence. I laid there for 7 hours until my parents carried me to the car and took me home.

I could go into detail about the hell that I lived in.  I could describe each procedure, new medication, diagnosis, and doctor that didn’t seem too keen on doing their job.  I could discuss the tragic murder of my original neurologist, one of the best in the country, right after she had presented the possibility that my diagnosis was what it would come to be known as months later.  Instead, I’ll provide a summary.  Over the course of the next few months, I would lose my memory and coordination, especially the dexterity of my hands, as well as losing the ability to walk, talk, write, shower, and eat (without the help of steroids).  I could no longer be in light without the aid of sunglasses and I couldn’t be in dark rooms with any form of bright light.  I couldn’t get floating glitter and blurred images out of my eyesight.  I couldn’t tolerate noise or touch, nor could I stand cold or warm water.  I couldn’t ride in a car without vomiting.  I saw not only neurologists, but cardiologists, acupuncturists, and ear, nose, and throat doctors, to name a few.  I made two initial hospital visits in February.  I had blood work and a CT scan done, as well as testing for meningitis, and an MRI.  Everything looked normal and I was discharged both times.  I went home until my pain was unbearable and I was recommended to UPMC.  I was taken through the emergency room  and immediately placed in the intensive care unit of neurology.  Blood work was again performed, as well as an EEG, MRI, a spinal tap, new medication, and neurological exams.  I would stay a day or so until they ran out of ideas.  This would repeat for three months.  There was a clear neurological disconnect, as I failed every neurological exam.  I was incapable of touching my right hand to my nose and vice versa.  Decorated and renowned neurologists in the Pittsburgh hospital were given my case, but no one seemed to have an answer.  After many blown IVs, painful medication intakes, side effects from medications (one in which felt like my body flipped upside down, following a cold sweat and uncontrollable shaking), and many tears later, an MRI showed inflammation and swelling in my cerebellum.  A doctor doing his residency noticed that all of the records on me thus far pointed to the diagnosis of status migrainosus, a constant migraine, potentially very dangerous if not diagnosed early on.  This had been considered previously but was disregarded and set aside due to it’s rarity, especially within a younger demographic.  He tried a mixture of medication and told me even if it worked, I had a long road of recovery ahead.  It worked and I was discharged with the pills needed to finalize the monster in my body.  The next months were full of physical therapy and reworking my brain, as well as fighting off anxiety and reintroducing myself to life.

People like to glorify the hard, physical parts of pain.  But if you want to survive, you have to endure it.  I left out quite a bit in the paragraph above, but it bored you, didn’t it?  It bored you because you didn’t feel the emotion attached to it.  You didn’t see the fear in my eyes and you didn’t feel the grip of my hand latched onto my parents’.  You didn’t see the tears in our eyes.  You didn’t hear me scream when the needle pierced my spine.  I watched my parent’s suffer.  I watched my illness strip my pride as it dirtied my hair and filled it with knots, as I peed in cups in my room because I couldn’t walk to the bathroom in the middle of the night and accidentally drank that pee hours later when anxiety struck my chest and I reached for water.  I saw myself revert to an unkempt child.  Emotional pain is the one that lingers in your nightmares.  I’m not proud that I battled through the physical, I’m proud that I weathered the mental.

I’m content that the times I spoke, I spoke of being able to get back on the softball field for the next game, of attending prom, of my excitement to hang my love lock in France.  I’m proud that in the darkest 2am nights with nurses by my side, I never lost hope.  I remember my dad showing nurses my softball pictures and, with eyes full of tears, telling them how healthy I once was. I remember hearing him cry alone at 4am, unable to sleep. 

Yet I am thankful, which probably seems like quite the paradox.  How could I be anything other than thankful?  I came out on the other end as a warrior.  I won.  I’m scarred with triggers and memories that flood my body with anxiety, but I am here.  I am alive.  I saw another side of life, I saw a human side to those who lay for days in hospital beds hopeful for a diagnosis, I saw the strength of people who are battling demons far worse than mine. 

But I am ashamed.  I lost a sense of pride within myself.  It was replaced with pride in my boyfriend’s intelligence and baseball career.  I lessened my worth based solely on the fact that I was not a flawless human.   My eyes had seen things and my body had felt things; my confidence had taken a severe hit.  The amount of times I told him to leave during the months I was bedridden is infinite.  A month into my recovery, he left for college, which was about four hours away from mine.  The healing process brought about guilt.  For the first time, I was jealous of every person that he met.  I measured my worth against theirs.  I never won.  I was no longer the athlete, or the funny girl; I was no longer “pretty.”  I was weak, I struggled to make it to class, I couldn’t go out with friends, I couldn’t drink, I couldn’t drive.  I craved his attention that was once so naturally given.  I was replaced with parties and new friends.  I kept reminding myself that in a normal world, it was okay.  But in the world we had, I needed him.  I saw him once a month when my parents or a friend would drive me.  Otherwise, my calls and FaceTimes went unnoticed.  I lived this life with him for three years.  When he never visited me in the hospital, when he raised his voice, or when I didn’t hear from him for a week’s time, I blamed myself and the stress my health had put on him.  I thought I needed him for reassurance, but I’d never felt more alone.  Perhaps my reason for staying with him wasn’t because of love, it was the fear of never finding love with someone else.  I was afraid that no one else would be capable of faking their love for me.

It wasn’t until I let him go, that I found my self-worth.  I began to grow outside of my shadows.  I realized that I had always been the selfless one.  I was constantly focused on his feelings and wellbeing more than my own.  I think he took pride in appearing like the hero, the one that loved unconditionally.  But I was the one that would drop anything to help him.  I understood that I loved hard and endlessly, without agenda.  Once I began to heal, I tried so hard to compensate for what I couldn’t previously give him, but it was to no avail.  So, I left and found my people in the lonely hour and he found himself reaching for me, but it was too late.  All I wanted from him was to be loved for what I was, not to be loved once I grew into someone that created something beautiful out of rubble.  The illness that tried to take away everything, coincidently gave me  everything.  I found myself in the midst of the chaos.  I found self-love in the process.