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.