Learning I had a Urea Cycle Disorder (UCD) happened during a transitional time. I was diagnosed at 13 years old. All I wanted in the world was to fit in and now I was being told over and over how rare and special I was – how lucky I was to be alive. No one really explained what happened or how things would forever be changed, they just were.
I vividly remember being talked about in hospitals, doctor appointments, family meetings or whenever my family felt like sharing – like I wasn’t even there. “Um…I would really like to be excluded from this narrative!” No one asked if it was okay with me to share my story, or if I was okay with talking. My boundaries were being trampled on during a time in my life when all you want in the world is a little independence, a small amount of control.
My world felt out of control
The world continued to feel out of control in this transitional time while I was trying to become a Mean Girl the likes no Regina could ever touch. Mostly that meant pretending like nothing was wrong. I would end up embarrassing myself due to my UCD at the weekly party before going to the hospital. Looking back, I remember the time I passed out and the quarterback carried me through the party with my skirt over my head, and the time I threw up exorcist style on the homecoming queen during a school pep rally. Mostly I ended up looking like Moaning Myrtle more than Regina. I would hide my medication, ignore my doctor’s recommendations, eat like nothing was wrong, and stay out in the sun all day – all the things that weren’t helping my situation to control my UCD. I had an “I do what I want” attitude and created way more drama for myself.
I graduated high school (barely) but was super unstable with my UCD management. I was sick all the time. I continued on a life of illness that kept me from graduating from college until almost 10 years after high school. Even then it was only with massive challenges, including several long term hospitalizations. I struggled – keeping up grades for scholarships, applying for FAFSA, figuring out moving, ordering medicine, being on my own medical insurance. What is a co-pay? It is gonna be how much? Not to mention trying to keep a job while managing a disorder that makes you feel like you have been hit by a bus daily.
Ultimately, I got really sick and almost died. After that, I decided I did not want to continue to live in and out of hospital stays. Feeling crappy and fighting a dragon of a disease every single day. That day I laid the sword down. No more fighting. I asked myself, how can I embrace my life and my personality with this disease? So much peace came flooding to me instantaneously.
My life began the moment I realized that my full potential will be reached with embracing the disorder. It is mine after all. This is my life. I will decide how it goes. That is the only true thing I have control over. Looking back it would have been so much easier to transition through teenage years, to college to now with someone to guide me. Controlling the uncontrollable is like taming a dragon, but I am the Mother of Dragons!
— Lynzi “LynZebra” Russell, Urea Cycle Disorder Patient, Rare Advocacy Writer, Curator & Public Speaker
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