Six Word Story

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The Fault in Our Portrayal -- An IBD UC Perspective

This week marks two years since I was diagnosed with Ulcerative Colitis, Inflammatory Bowel Disease. I thought it would be appropriate to share this narrative I wrote in my college English class earlier this year.

The Fault in Our Portrayal

As I step out of the cold wind and inside the large familiar doors, I catch my breath. This is Infusion Number Five. The musty elevator dings, I light up the button for floor number three, and soon I’m zooming up to a whole different world. Stepping into the bright, playful pediatrics wing, I’m greeted by beeps and cries and footsteps. I exhale, feeling a sharp deja vu of a similar place two years previous. There are countless connotations behind “hospital”: scary, intense, romantic, or exciting. People often desire to go to the hospital simply as a pathetic pity plea. Seeing the general media promote these assumptions is annoying and cliché; especially for someone among thousands cursed with an out of control, chronic, autoimmune disease for the rest of her life. In my instance, I’d do anything to never have to step foot in this place again. Unfortunately, that won’t be the case. The memory strikes my mind again, threatening my tear ducts and short fuse.

I was rushed into the small waiting room and plopped down into the seat against the cold beige wall, doubled over, struggling to breathe, and wincing in pain. I faintly heard my parents recite my birthday a few times to the receptionist. The strong, pungent odor of sterilization stung in my nose. I felt a cold band wrap around my limp wrist. The squeaky sound of wheels whizzing down the hallway and into the room was almost too much to bear. My eyes still squeezed shut, I was lifted from the scratchy chair and into the wheelchair. I looked up suddenly, the sharp knife in my stomach subsiding for a brief moment, and saw the bright flashing light and the loud obnoxious dinging of the elevator. I was barely coherent as the nurses flew me into my cramped hospital room and hooked me up to an IV, like a dog tied to its leash. I could instantly taste the bitter saline flowing through my vein. I laid my head back on the flat rock they called a pillow and closed my eyes once more. I listened to the steady rush of people coming in and out of my small room, their footsteps as constant as rain on a window. I tried focusing on the strong smell of the nurses’ hand sanitizer to distract me from the hurt in my stomach. What felt like hours later, the doctors came in, talking a mile a minute and poking and prodding at my body like a middle school science experiment. When the mass of busybodies left, I was alone, and in more ways than one. Way One: Physically. I heard my parents step out of the room to speak with another nurse and I finally had a chance to take in my surroundings. A million cords and tubes and wires were attached to my arms and chest; random, yet constant, beeping was coming from three contraptions to my left; an itchy, beige blanket was tossed over my weak body; and a small, outdated couch sat under the expansive window. Way Two: Emotionally. Why me? Why now? I was supposed to be at school, laughing with my friends, making awful jokes, and procrastinating my homework. What now? I was there instead, lying on that terribly uncomfortable hospital bed, unable to move because of my anemia, malnutrition, and lack of will power.

By the time night fell, I expected the world to quiet down. But of course, I could do anything but sleep. The persistent green glow coming my IV pole seemed as bright as daylight, the orange light seeping under my closed door could not be harnessed, and the random red flashes from various equipment kept me easily distracted and paranoid. The sticky pads of my heart monitor were constantly itching, the lines from my IV kept getting tangled up in my blanket, and my dad was snoring emphatically from the couch in the corner. The kind nurse was ordered to come run a cool thermometer over my head, squeeze my arm for blood pressure, and steal the warm crimson blood from my vein every hour, on the hour. The night was endless and restless. I yearned for my comfy, warm bed at home; I longed to be tucked away and dancing in my dreams. The cold, itchy blanket tugged me back to reality.

Bright and early the next morning, I was informed that I would not be able to consume any food or liquids for at least the next ten days; and instead, I would receive full nutrition through my IV. Instantly my mouth began to water. Liquid nutrients would not suffice for my sanity. I needed the delectable taste of a sweet, cold popsicle or maybe a hot, juicy burger. Even the thought was painful. I could feel my stomach growl violently, threatening to eat itself if not given anything else soon. Every delicious scent in the air became untouchable and unattainable. In my case, with my disease, food is the enemy. It destroys and tears and shreds my insides; but at the same time, food is the ultimate craving. We take it for granted every day. The emptiness inside gurgled and churned, only making the pain grow stronger.

On the thirteenth day, that day of freedom, relief, joy, and gratitude, I was released from my temporary home. Saying a bittersweet goodbye to my trusty IV pole, I hesitantly stood up to walk once more. Stepping outside into a cold world of reality and misconception was quite an adjustment. I reached to touch the hole in my upper arm where my PICC line used to be, caressing the scar and mustering the confidence to move forward. Remembering that first hospitalization experience is still traumatic for me. Seeing movies, books, and TV shows in the media today portray chronic diseases and hospitalization as romantic and exciting sickens me. I’m sure two lovers suffering from life-threatening illnesses have perhaps cherished their last few days together. I’m sure it is possible that a few pediatric patients diagnosed with various diseases have banded together through friendship and trial. But the truth of the matter is, real people are out here suffering from real diseases and real illnesses. There is a concerning misconception of hospitals in our culture today. As I sit here during my fifth infusion in this cold, uncomfortable hospital bed, hooked up to an IV pumping fluid into my right arm and a blood pressure cuff squeezing every fifteen minutes on my left arm, I wish the world understood. I wish the world could see the intense reality behind the movie screens and book covers and try to realize the story of the real person instead of simply the actor.