I sat in a sterile room at Detroit Children’s Hospital listening to the nurse take role call: Cellcept, Plaquenil, 81 mg Aspirin, Levoxyl, Naproxen, Vitamin D supplement, and Prednisone. She spoke in a different language that I couldn’t follow. So I focused just behind this stranger, to the silver sink where there the spout reached tall over the basin, and then to the neutral colored wall even further beyond. The words she spoke fell into a muffled blur until a cold stethoscope brought my attention back, the doctor was here. Everything happened fast, yet I sat waiting for hours. It’s funny how illness has a way of skewing the perception of time. I filled this time trying to understand it all, yet I came out understanding very little. All of that time reduced to the few moments of clarity. Here is what I knew: take ten pills in the morning, three at lunch, five at night. After consuming my medicine cocktail, a lovely spell fell over my body. The waves of pain that crippled my joints vanished, the chronic fatigue was curbed, and the possibility of blood clots diminished. Yet the magic fathered emotional agony that led me to question the importance of my medication. There was one, in particular, that became the ringleader of trouble. For me, Prednisone never really escaped the connotation associated with the word “steroid.”
My affair with food began here, a lust affair. When I taking steroids, everything looked tantalizingly edible, and a small snack easily turned into a feast. We had just gotten our kitchen redone that year, and I had found a sanctuary within it. Pomegranates, apples, and oranges crowded around the fruit bowl and reflected off the beige granite begging for me to taste them. The produce on the counter represented a mere offering of what the sub-zero refrigerator had in store. Milks, cheeses, lunchmeats, veggies, dressings, and more awaited me there. I had access to all of it. Prednisone created a bottomless cavity looking to be entertained. I ate all the time because of the chronic hunger. This continuous consumption even helped fill the gaps of confusion. The mist surrounding my life needed to be solidified by something, and food was something.
Yet all that food, as comforting as it was, took a toll. Soon the weight of the food began to find permanent residence within my body, and the side effects of Prednisone became visible. My cheeks began to swell, and my embarrassed eyes hid beneath them. The structure of my face elicited comments like, “Are you packing nuts for the winter? Your cheeks are huge!” I could tell when kids at school were talking about me. The side glances in my direction and a whisper in a friend’s ear became an easy indication. Soon enough, my thoughts were consumed by food and how others viewed me, and academics started to lose meaning. The school shortened my schedule to a half-day because I became tired, apathetic, and riddled with doctor appointments. As I walked through the halls, I realized that people had a hard time looking at me; even my friends couldn’t shoot me a straight stare. A recognizable glance and a responsive wave would have saved my day, but nobody wanted to meet those two slits in my face. So I sat through classes and headed back home alone. On my way, I walked parallel to the troop of students driving off to lunch with their friends. Their Jeeps bouncing as the declined driveway of the parking lot met the street. They were ready to go to “The Big Salad” or maybe “Lunchbox Deli.” I could almost smell the vinaigrettes trailing behind their cars. A poignant raspberry with bleu cheese crumbling after it, tossed in a mixed green salad. My mouth watered at the thought of their food fun. With each step, I hoped one of those cars would stop for me, but none ever did.
Upon my arrival home, I would sit in the kitchen waiting for my mom. She could always give me a straight stare into those bloodshot and inflamed slits, but I had no intention of meeting her condoling eyes. Her pity only led me to believe I was even more pathetic. There must be someone that could look at me, and not see anything. I started to personify food. A Pink Lady became the apple of my eye. I glided over to the fruit bowl and picked out a fresh one. I rubbed my hands along the rounded curves until my fingers come to a stop in order to cup the Lady. I closed my eyes, sunk my teeth through the skin, right into the meat, savoring the sweet nectar as it filled my mouth and trickled down my throat. I would eat a million apples and crunch them so loudly that I didn’t have to hear words like “Lupus.” Then after, I would feel full and satisfied, something that social interactions could not provide at the time.
The social and physical implications of the medicine helped established understanding of an ulterior side of Lupus. The nurse’s foreign words began to take on a deeper meaning than the medical terminology recited at the time. Words that ultimately constructed the significance of my disease: I was different, and very alone.
I walked out of Children’s with the looming uncertainty of having an ambiguous disease. One that meant pain, but never a clear, definite hurt. The doctor started me on 60mg of Prednisone during that first visit, a mistake that cost me dearly. My symptoms and blood test results didn’t deserve the dose that I received. The side effects brought on by Prednisone were not ideal: the obvious weight gain, a roller coaster of emotions, confusion, and a stutter that paralyzed me in front of class. It was hard to hold a conversation with my classmates when the thoughts and worries of one another don’t coincide. Through all of this I learned, always growing in my own ways. I found that food could be a lot more than physical sustenance. As people we want to be understood by everyone, or someone. And food, it became an emotional backup for me. Sure people criticize the use of “comfort food,” but where were you when I needed a friend?