I sat in a sterile room at Detroit Children’s Hospital listening to the doctor take roll call: Cellcept, Plaquenil, 81 mg Aspirin, Levoxyl, Naproxen, Vitamin D supplement, and Prednisone. I consumed these words practicing for the pills to come, but my heart sank as he fell down the list. Each interval bearing the weight of the reality that more pain loomed around the blank walls of sickness. Looking back, stomaching this information seems easy; she didn’t know what was coming.
Fast breath and wake. Confusion. A rampant dream I can’t control. Its deadly grip forcing me to comprehend that this is real. There is nothing dreamy about this nightmare.
I began a regiment that lasted for the next year. Nearing ten pills a day, none affected me as much as Prednisone (a steroid that is used to subdue the immune system.) This is where my affair with food began, a lust affair. Everything on steroids looks tantalizingly edible, and any snack turned into a meal. We had just gotten our kitchen redone, and I had found a sanctuary within it. Pomegranates, apples, and oranges reflected off the beige granite begging for a taste of my mouth. The fruits on the counter were a mere offering of what the sub-zero refrigerator had in store. Milks, cheeses, lunchmeats, veggies, dressings, and more found their home in this chilled box. I ate all the time because I was always hungry, and it filled the gaps of confusion. The mist surrounding my life needed to be solidified by something, and food was satisfying.
An epicenter becomes clearer. One knee, two knee. A pain so searing there must be a bomb inside my legs. I stagger to find my mom, but mothers don’t always know what to do.
The constant procession of food that fell into my mouth did not continue without consequence. 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 glance in my direction and a whisper in a friend’s ear. Distance grew between me and the other kids. I started to personify food. It felt sorry for me and consoled me because I had lost the game.
“Mom kill me, please just kill me. I can’t take it. Fuckin’ kill me.” She is sweeping my hair back. It sticks to the top of my head, matted by sweat and tears. I’ve never felt this pain before; I couldn’t have even comprehended if I tried.
My favorite food at this time was granola crunch. The sweet nodes of honey and sugar were followed by the deafening sound biting into the mixture. I would listen to the inside of my mouth, and tune out whatever stresses my parents released. The kitchen that year became the hub of all information. Everyone passed through and left an opinion lingering there to be kneaded, mixed, and cooked. As the toll keeper for the kitchen, I tasted everyone’s problems, but none stung as much as my father’s. The constant drain of the economy had made him a tired, jaded man. Financial hardships were his only topic of conversation. He didn’t understand that a house was supposed to be filled with love. He didn’t know I didn’t want that negativity and that the only toll I needed was a hug.
Scream, bloody murder, SCREAM.
I had given up on academics at this time. The school shortened my schedule to a half-day so I could attend all my doctor’s appointments. Lucky me. In my half-day, I walked through the halls knowing that I was the ugliest thing in the world. People had a hard time looking at me; my friends couldn’t shoot me a straight stare. After a few hours of classes, I headed back home, walking parallel to the troop of students driving off to lunch with their friends. Upon my arrival home, I would sit in the kitchen waiting for my mom. My mother could always give me a straight stare, but I hated her stares because she would get teary eyed. There is nothing more pathetic than having your mother cry while you’re staring at each other, absolutely nothing.
Two floors down, my brother has heard me cry. Seated on a chair across from my mother’s bed, he catches my eye. I can see him through my tears. My brother has always been overprotective, yet he just sits there. A helpless adult. There is nothing anyone can do for me. My mom and brother watch as my body is tortured, killing itself from within.
I had lost the game a while ago, positive that I had nothing left. I stopped any effort toward school and even tried to facilitate an imminent end. Sometimes, an end means a beginning of something new. Other times, it means that you’ve come to terms with things and you keep living them.
Today, I’m in the kitchen making dinner and writing a memoir. I watch as the steam escapes the rows of kernels on my corn; I am reflecting. What started as a prompt of my dietary restrictions, quickly transformed into a wave of emotion that was my life. I am better now, and sometimes I’m even happy. Sure, I have Lupus, but if I eat right and find control in life, then I can manage. Making sacrifices to preserve my health is a small compromise. I eat more vegetables, cut out most dairy, and relieve myself from stressful situations. Another flare up can always be around the corner, but everyone has pain. And this is my battle to fight. Although many people will try and offer empathy in times of pain, I’ve found the most important virtue is understanding. People want to be understood by everyone, or someone.