Cheyanne Perry

Feb 07, 2019

A woman stood amongst the rubble, solemnly watching as the emergency crew prepared her husband for transport. An officer contorted his face with a hardened expression, delivering the unfortunate news. It was assumed he fell asleep behind the wheel. The predicted outcome was grim. Despite numerous miscarriages, the young newlyweds were unknowingly parents the day of the accident that killed my biological father. The shattered glass compared to our family’s future—broken, with pieces missing, but with a slight glimmer of hope reflected in the kaleidoscope of ambulance lights and the morning sun. I was their miracle baby.

Thirteen years later, I sat near an alcove on the pediatric unit. Oxygen tubing rested comfortably on my nose and an IV cannula infused medication into my veins. One whiff of the nurse’s perfume and a shade of red accompanied my itching skin. As my heart pounded like a subwoofer in my chest, every organ in my body was replaced with fire. This reaction felt like the end of the world. In a way, it was. Life as I knew it was altered upon my diagnosis of Mast Cell Activation Syndrome (MCAS).   

Gone were the days of racing around the bases on the softball field. I was undoubtedly different. While my peers remained lost in teenage invincibility, I quickly had to find myself. I spent a great deal of time questioning God. Why did I become sick when my parents struggled so to have me? Why was I not be healthy like others my age? Adjusting to my MCAS diagnosis was a learning curve.

Chronic illness, in combination with loss, revealed the importance of cherishing my relationships. My mother, step-father, and fiancé sacrificed almost as much as I had because of my condition. Sure, they were not the ones stabbed with epinephrine or eating by a tube in their abdomen, but they dedicated countless hours to waiting rooms and creating an entirely new chemical free lifestyle. I am forever grateful for the changes they made—like something as seemingly bizarre as converting the garage into a kitchen to prevent my reactions to cooked food proteins in the air. Such selfless actions demonstrated throughout my illness showed me that people truly care and are willing to accommodate when able.

As I walked the stage as high school valedictorian, and again when I completed the final course for my first college degree from a hospital bed, I had an epiphany. I recognized I must live with purpose. Although I had to defer my college scholarship in 2015 due to an eight-month hospital admission from uncontrolled anaphylaxis, I could still be productive. It was during that admission that I started my blog, hospitalprincess.com, as a resource for those enduring chronic illness in their young adult years. I took further advantage of modern technology and enrolled in an online school. It was not the lecture hall I dreamed of, but the online assignments allowed me to pace myself with less exposure to triggers until healthy enough to return to a classroom setting. Now, I am two semesters shy of my bachelor’s degree to pursue a career as a counselor who specializes in chronic in terminal illness.

Writing this, it’s as if my entire existence has been one tragedy after another at only age 22. I would be lying if I said there were not days I question my faith. But isn’t life all about learning to take the good with the bad, and appreciating the highs because we’ve experienced the lows? I might be the author, but this is not my story to share. Only He can guide my pen, and I will go wherever His words take me—even if that journey includes the arduous battle of a mast cell disorder. It does get better.