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Lucy, age 17, Iowa

Halfway through class I was overwhelmed with a feeling of nausea and dizziness. When I told my teacher, she thought I was being dramatic. My chest ached and my heart was pounding. I couldn’t figure out if I was going to throw up or pass out, so I stood to leave. When I stood up from my chair my head felt floaty, and the room started to spin. I could imagine the cartoon birds singing above my head. The voice of my teacher yelling for me to sit down got drowned out by their high-pitched chirping. Another teacher from next door heard the commotion and took me to lay down in the hallway. She laughed saying she had never seen anyone so pale as I laid below her on the cold tile. Soon my parents were called to take me home.

This wasn’t the first time I got sick. I grew quite a repertoire of locations. On flower beds, at sport games, at school. But it started a series of doctor visits. It’s kind of funny how, no matter the doctor, the office still feels the same. Colorful pictures lined the walls. The crinkling paper lining the examination table, and the squeaky plastic chairs moments away from breaking. The same questions from each doctor blended with the white noise machines. As the list of symptoms my mother would raddle off to the doctors grew, so did the orange plastic cylinders. I have always liked orange. However, my thoughts of orange quickly went from sunsets and flowers to plastic cylinders. Now every room in my house contained multiple orange plastic cylinders. Each had a white label with a series of warnings and promises. The labels lied. While sometimes they would help, it was always short lived. And so, the label changes with new symptoms and promises.

It took years of seeing different doctors and endless tests to finally receive a diagnosis of an autoimmune disease -Hashimoto’s thyroiditis- and autonomic disorder- POTS. I was excited to have a name for what was happening and to know it wasn’t all in my head. With my diagnosis I thought all my problems would magically go away and everything would go back to normal. But it didn’t. It almost did the opposite. Even though I knew why I was feeling this way, there was no cure. As I got worse, I started to miss weeks of school at a time.

I would stay in my room for hours, staring at the wall watching the room shift and turn around me. I memorized every crack that would twist its way up my wall to the ceiling. The paint seemed to chip from the intensity of my stare. My walls now held the thoughts and stories that no one else can see. The silence bouncing from the walls causing sharp noises hurting my ears. If I tried to move, I wouldn’t get far. My longest travel was to the bathroom. Each trip I said goodbye to my room preparing for the treacherous journey ahead. I felt like a weeble wobble, repeatedly stumbling but always coming back up. Not knowing if I would make it or not, a bright light shining from the open door. The battle scars of bruises and cuts littered across my legs, as I returned to the room triumphantly.

My most exciting days became going to school. After days of looking at the same space for hours at a time I felt ecstatic for a change of scenery, even if it was just whiteboards and textbooks. Throughout the months I spent buried in my room I continued to try different tips and tricks in hopes to find something that would work. Finally, I found a combination of multiple different colored pills and slowly gained my energy. The days I started leaving my cocoon I watched as the world expanded. I had spent months staring at the same pale-yellow patch on my wall that all the colors seemed so bright.

Getting better is never a linear process. For weeks I may feel great and have extreme amounts of energy. Then the next day my eyes return to the same cracked bedroom wall, normalcy dangling in front of me like a carrot on a stick. The symbol for my disease is a butterfly. Before a butterfly could fly and wander the world they had to crawl. Day after day they would slowly move up a leaf and wait for a time where they could fly. No one thinks of a butterfly’s journey, but only admire their beauty. I feel like that describes my journey. No one can see what has happened for me to get to where I am. I now know that through determination I will be okay. Despite being sick I can still accomplish my goals and gain new achievements. Though I am not grateful for being sick, I am grateful for the positives that have come from it.

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