A piece of me…

*This is a creative non-fiction story that is based on my own personal past. A journey that shaped who I am today, and impacted my view on life. After years of keeping my inner thoughts to myself, I feel a sense of relief to write it down and put it out there for you to read.*

Normal Is Overrated

Lying in my twin-sized bed, staring up at the old faded stars stuck on the ceiling. At some point over the years, they stopped glowing, and I have been too dang lazy to take them down. It’s dark now. Leaving my window open to feel the crisp fall breeze filter inside and letting my thoughts drift with it. Four years. That is how long I have been imprisoned in this unknown agony. Trapped in my own body, my personal cage. My soul is wild and unbound, craving to do everything my body is denying. Forcefully squeezing my eyes shut, I clutch the downy blanket underneath me as I fist my hands. Not fair. This anger and frustration are pushing me to the edge of being defeated. Wanting to let myself succumb to the sadness within. I’m only 13 and 9 when this all began. Four long years of numerous doctors, tests, physical therapy. All were stating that there is nothing they can do, possibly arthritis or something I will outgrow. But this pain abusing my hips feels like a knife is slashing through my joints relentlessly. Depriving me of running, walking with being forced to limp, and even hindering me from putting on my own damn socks. Helpless. My eyes burn as a single tear wanders down my cheek as I drift off to sleep. Mentally preparing myself for another doctor’s appointment tomorrow and seeing no hope in sight.

            The following day, I was sitting in University Hospitals Cleveland Medical Center. Another waiting room in a different hospital, but they all began to look the same. The warn leather seat I’m sitting in does nothing for comfort. I start mindlessly scraping my nail over the rough edges of a tear in the cushion while silently watching people shuffle around the halls. My mom sits impatiently next to me as we wait to be called back for my MRI the doctor requested before meeting him. Checking in and answering the nurse’s questions feel robotic to me now. Time dragged on before we were called back. The MRI tech informed me that I would be receiving a contrast dye intravenously before the scan begins. The pinch from the needle was minor, and I could feel the dye’s chilled liquid creep through my veins. A sudden rush of metal and a tang of bitterness overflowed my taste buds. The scan was almost tranquil, even if this platform I lay on is unwelcomely cold. Goosebumps raised on my arms as a shiver swept over me. Closing my eyes, enjoying the steady hum of the machine and savoring this unperturbed moment.

An hour later, the nurse sent me to the doctor’s room to wait. I figured I should try to make myself comfortable in this faded brown suede chair since it will be awhile. My mom next to me began flicking her nails. Ugh. The sound of it makes me cringe. Every. Single. Time. Before I tell her to stop, she starts to enlighten me about what she feels might be “wrong with me” from her latest search on Google. My mother thinks Google knows all and can “cure” me. Restraining from rolling my eyes, I ignore her and glance around the room. Just another white, sterile, and impersonal space that smells like disinfectant. My chest begins to feel tight, but why? I have no hope left to give. Maybe it’s nerves or the depressing expectation of another dead end. Amid my thoughts, a knock sounded right before the door edged open. The doctor ushered himself inside, his face brightening offering us a cheerful smile causing the corners of his eyes to wrinkle. He reached out his hand to introduce himself.

“Hi, I’m Dr. Hashkis. So nice to meet you!”. He beamed, gently shaking my hand.

            I looked up hesitantly as I shook his rough, calloused hand. “Hi… Ali. But you probably already knew that.”

            He nodded in agreement. Then proceeded to introduce himself to my mom. I braced myself for what he was going to say next. I could see his eyes vaguely dim as he crossed his arms over his chest, leaning against the counter. His smile softened as he looked at me. The pounding of my heart began to quicken. My breath caught when he started to speak.

“The contrast dye that was administered for your MRI scan allowed me to see a more in-depth view compared to a regular scan. What I found was cysts on your hips that are slowly causing those joints to deteriorate. In simpler terms, your body is attacking itself.”

            I think I blacked out. Not sure if I was still breathing. Shell-shocked. Dr. Hashkis noticed my distress and continued speaking before I could ask what all this meant.

            He uncrossed his arms, folding his hands in front of him—sympathy in his eyes. “I need to be blunt on this, and I apologize. Your diagnosis is called Ankylosing Spondylitis, which is an autoimmune disease. Your case is rare since, typically, this is most common in someone much older. Then, add that there is no family history with this disease that you are aware of. Unfortunately, there is no cure. There are treatments, though. You are so young, and I am afraid if you do not start treatment… you will need a hip replacement by the time you turn 20.”

            My eyes were burning from the tears that I struggled to hold in. This doctor just laid it all out there. My chest felt like it was just ripped open. My mom began rubbing my back, asking about the treatments, while I retreated to my internal chaos.

            The doctor turned those empathetic eyes back on me. “I want to start treatment today. This will be in the form of injections twice a week, and we can provide your first one here to show you. The shots will need to be administered behind your arms, stomach, or the top of your thighs. The medicine will help, though, significantly.”

            No words left my mouth; I just nodded and let my mom discuss the rest of the details. Well… I got my answer I so desperately wanted. Was I ready to face it? Do I have a choice? No. No choice. I am being forced to dive headfirst before I can even grasp my new reality. NOT CURABLE. Those words constantly cycling in my head. Devastation. Confusion. WHY ME?! I should be thankful the doctor found the reason for my pain. But, why do I feel so frustrated towards him? How awful can I be to be mad at the one person who provided an answer? Deep down, I knew why… it was an answer I did not want to hear. My head dropped down, my eyes downcast, my hair falling over my shoulders, and the tears that threatened to fall finally let loose. Each drop trailed down my face, speckling my denim jeans. I felt broken.

            That night I holed myself in my room, keeping the lights off and drowning in my own misery. My mother now looked at me with pity, as did the rest of my family. I just want to be “normal” like the other kids. Clenching my teeth together, I tucked myself deep in my closet, pressing my face to my pillow, and screamed my bloody heart out. My throat ached as I crawled back in bed. An unforgiving pounding started intruding my head. No more tears would fall tonight as I welcomed the blackness that swept over me, allowing me to escape this harsh truth that was now my life.

            I’m ashamed of myself for the maddening thoughts I have, even though a month has passed. Staring at my reflection in the bathroom mirror, taking in the bruises that marred my body. The injection sights stayed permanently sore each week. This darkness that invades my thoughts is not who I am—becoming infuriated with myself. Why am I wallowing around when so many others have it worse? The reality of that epiphany slapped me across the face. Dragging my gaze to my eyes, I stared directly at myself—determination washing over me.

            A few months went by, and the pain was subsiding. I could run again. The door to my personal cage tore open. I ran and never stopped. I was reveling in the feeling of the wind brushing through my hair and against my face. The sound of my feet pounding on the concrete, pushing my legs as fast as they would allow. Arms pumping and lungs burning, I felt free.

            With this new form of freedom, I joined the track and cross-country team in 8th grade and all through high school. I pushed my body to the limit every practice. I still felt that my disease was on display as if everyone could tell I was not “normal.” I kept my condition a secret from even my close friends. Afraid they would see me different, with pity-filled eyes.

            I refused to feel helpless again, and a fire developed to keep my body strong. Punishing and demanding myself to exert more strength, I began improving. Finishing each race with a faster time. Reciting the well-known phrase “pain is weakness leaving the body.” I willed that to be accurate and exhausted myself each day, filling my need to do better.

*15 Years Later *

Sitting on the white wood bench, looking out at the crystal blue water of the ocean. The salty breeze billowing around me, seagulls soaring overhead, thinking back to when my life changed. My lips curved upward, wishing I could tell that little girl back then that everything will be okay. I began writing in my journal, becoming aware of the hardship I had to work through; that’s what made me stronger. The battle I had to face mentally in the past had fueled my will—a will to overcome those struggles. I’m proud that I made my body strong because at 28 years old, I still have not needed a hip replacement. My recent MRI scan showed no further damage inflicted on my hips. A sense of calm washed over me, taking a deep breath and exhaling. I looked up at the cloudless sky and huffed a laugh. Remembering that I just wanted to be “normal.” Smiling to myself, I knew with absolute clarity that normal is overrated.

By: A.Stuebbe

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