In October of 2012, my world was turned upside down. I was no longer the average sophomore girl going to high school football games on Friday nights and having sleepovers with my friends, gossiping about boys. I was a girl confined to a hospital room, with hardly any windows, attached to machines, being poked and prodded every day.
For two years I battled an invisible illness. And I still battle it today. Not to the same extent as I did before, but unfortunately I will never again know the definition of normalcy.
It started with headaches, awful headaches. Then it progressed to leg tremors. I spent my sophomore year handicapped, in a wheelchair. The once simple task of walking to the bathroom by myself, I could no longer do. Day by day, I became accustomed to this new life; a life where no doctor could tell me why, a life where I was no longer independent. As time went on, my leg tremors faded, but I began rapidly dropping weight. I went from 118 pounds to 97 pounds within two weeks. I vomited everything I ate, including water. My doctor had me track how many times a day I would vomit, averaging around 8-10 times daily. Again, doctors ran tests that came back inconclusive. Eventually, I could not longer rely on my body to keep me nourished and alive. Instead of enjoying the holiday where you eat until you can no longer breathe, I was put on a nasal feeding tube for survival. Of course, more tests were ran and no answers were found. I commonly got asked by doctors if I had an eating disorder or if it was all just something in my head, but it wasn't. I was seriously ill. After six months with a nasal tube, my body began to reject my feeds and my vital organs were failing. Doctors told my parents there was no cure, no diagnosis and no guarantee I would make it.
By the grace of God, my gastroenterologist called my mom on February 13, 2014 with hopeful news. She had collaborated with doctors around the nation and they devised an experimental treatment I could try in order to avoid having a permanent feeding tube implanted. I was inpatient for three weeks, but by the end of those three weeks, the treatment was successful. I could eat a peanut butter and jelly sandwich again, I could go back to school and have lunch with my friends instead of watching them eat during lunch break.
While the success of my story is unfathomable, I am still not perfect. Yes, I was diagnosed as the only patient in America with my condition, and yes, I am far recovered - but I still struggle.
Every day I wake up and have to be careful of what I eat - most foods make me nauseous. My immune system is shot and if I don't stay on top of myself during college finals I get even sicker than the average person. I developed multiple learning disabilities from my illness that cause me to have to work extra hard in school. I take medication every day to prevent any chance of this illness controlling my life again. Although I look like your typical 18-year-old college pageant queen who balances her non-profit, extracurriculars and studies; I am a girl living with an invisible illness.
Even on the days I don't feel 100 percent, I get up and go after my goals. I work hard to ensure that my illness remains a part of my life, but doesn't define me.
I'm unapologetically me. Miss Teen California International. Peanut butter addict. Future child life specialist. Self-pronounced movie critic. "Monsters Inc." fanatic. Proud sister. Creator of A Rae of Hope Foundation. Sophomore at TCU.
It goes without saying that when people ignore what I have been through and what I continue to fight every day of my life, it hurts. But, it pushes me to continue to prove those people wrong. Every single day I have the chance to make this a life I am proud of. I have been blessed with the opportunity to demonstrate to the world the daughter of God I was created to be, and every single day I wake up thinking, "My illness may be invisible, but I'm not."
