I Am Not A Wuss Amy Lentz   © Copyright 2018 by Amy Lentz

Let me begin with a small glimpse into my childhood. A small fragment in time and a small child’s reasoning, manifested into an outlook that has kept me alive, body and soul. As as child you have seemingly endless time to wonder, ponder, imagine; and that is just what I did. I had a thirst for knowledge on any and every topic and an endlessly creative mind. Most of my time was spent outdoors, mother nature as my muse. Indoors, my hands and mind were occupied with every craft and art supply I could think of; hand-me-downs from our artistic family members. My desire for knowledge outgrew the children’s books on my shelves, so instead, I began to explore my mom’s extensive (and slightly dusty) shelves of non-fiction, poring over the words I could and couldn’t understand. My mother, being the intelligent woman she is, took care and devotion to culture my curiosity; giving me answers to questions far larger and esoteric than sometimes my mind had thought to ask yet.

At the same time, I was beginning school; playing hard each day and each night feeling well aware of each sore muscle and creaking joint. As I ran up flights of stairs, my right ankle would crack each time it flexed. I cracked my knuckles sitting at the table in my kindergarden class. I remember aching pains in my legs and back on warm summer nights as my mother wiped the dirt from my sore feet. One such night, as she helped me dress for bed, the mention of the pain in my legs was dismissed as growing pains. Small things, like brushing my hair or clipping my nails, became large fights when I tried to explain that they hurt. She and I both recall her frustration with me as a child, for many routine things in daily life caused me to exclaim in pain.

By the time I had entered the first grade, I had had much time to ponder this conundrum: Why did I hurt? Because life hurts; I’d heard the adults say it. My mother said that it had hurt her when my Nana brushed her hair, too. I remember clearly thinking that in books and on television that adults have sore backs and sore knees; bad ankles and shoulders . I know that Mom tells me I’m very smart and that I’m self-aware. I know what that means. I understand myself in ways that other people can’t. It was with these thoughts one morning walking to school, legs dragging and alone at the back of the pack, that I stopped. There at the back of the school yard I stood at the favorite recess tree, watching the rest of the kids run and play before school, and my confusion suddenly led to a clear conclusion at six years of age: I must just be a wuss. I can still hear the blood rushing through my ears as the thought leveled itself on me, hear the tree rustling above me, and feel the sinking feeling in my heart. There was no other way around it for me. These kids must hurt just like I do, and it must be a normal part of life. I rationalized that they just weren’t as self-aware as my mother said I was and that they probably just bypassed the pains without realizing that they were doing it. I simply thought that ignorance was truly bliss for my schoolmates. I was completely flabbergasted and quite angry, but with no one but myself. How could I, the “little trooper” as my Nana had dubbed me, be this big of a wuss?! How dare I? I simply could not stand the idea of my pain being any sort of weakness, it offended my sensibilities and childish pride so badly! Right then and there, underneath that beautiful tree, staring at my happily playing classmates, I vowed to be stronger than the pain. What I didn’t know? That they were fine. Their bones and muscles didn’t creak and ache every day and night. They didn’t know the sting of a thousand daily tasks that never should have hurt.   

For over ten years, I operated on the belief that I was just hyper-aware of myself, remembering on so many occasions, my epiphany that day on the playground. Phrases like ‘Pain is weakness leaving the body.’ and ‘No pain, no gain!’ became an internal mantra, and I grasped at them like life preservers. I fought to push past my own boundaries, to stay “normal” just like the other kids. By 2008, life had led its own strange and winding path for me. I was taking advantage of the advent of public cyber-schooling and my own curious nature to make up my Sophomore year, as well as complete my Junior year. As such, I spent most of my time at home, working on school work, with the television on in the background. It took several months before the commercials for the use of Lyrica for Fibromyalgia pain to began seep in and I realized that my epiphany on the playground might not actually have been an epiphany at all. By the time I was seventeen, I was connected with a pediatric rheumatologist at Penn State Hershey Medical Center and was given my diagnosis at my first appointment. Fibromyalgia. Thought to be caused by over-active nerve endings. My epiphany changed that day to a realization with my diagnosis: My pain was real. And so was my strength to ignore it. With this realization came a blessing: I could beat this on my own. There may be no cure, no cause, no reason for my disease, but I could ignore it! I could work through it, past it, around it. I could pretend it didn’t exist!

Every day of my life has been an internal struggle, and that has translated to many an external struggle. I live every day with an invisible disease that not only is the cause of phantom pains all over my body, but is also labeled as a chronic exhaustion disease. I wince when people high five me or clap me on the shoulder. Some mornings I can’t walk on my own feet until I find slippers or shoes to pad their soles from even the softest of carpets. If I hold something too cold, I feel icicles stabbing through my wrist to my elbow. I bruise like a peach and every joint on my body including my sternum, collarbone, and the balls of my feet crack. But, I’m still here. I still work, I still walk miles when I have to and I hike for fun. I spend twelve plus hours on my feet being a mother and I’ve never taken any medications. It’s been nearly a decade since my diagnosis. Many say they don’t understand Fibromyalgia, and many more will never try. In a way, just as I thought as a child on the playground, ignorance is bliss. Most people can’t even imagine what a disease like this would feel like. I will still continue to fight my disease and its doubters every day. I’ve not quite given up on making friends and family truly understand what a disease like this does to a person, but in the end, it is still possible to live. It is still possible to thrive. I might not be able to make others understand, but I can go onward as proudly as I did in my childhood, proclaiming to myself “I AM NOT A WUSS!”.