By Lexi Uslu
I plunged into the deep dark depths of disparity that is chronic illness early on in my life. It didn’t take me long to realize I was different than all of my peers. The casts, the wheelchair, the trashcan next to my desk that was constantly in use due to my upset stomach; it was all so different from the rest. I wasn’t a “normal” first grader and each and every day that fact solidified. The doctors didn’t know what to do for me and so my family moved to Boston for what they believed to be the world’s best children’s hospital, but they didn’t know how to help me either.
Looking back on my life, 15 years later, my heart becomes filled with mixed emotions. Anger, sadness, happiness, disappointment, and confusion lead at the top of the list. The discrimination I faced as a disabled child and the childhood that was stolen by my rare diseases leaves a permanent gash in my heart. I could list all the diagnoses and surgeries and I could fill a million blank sheets of paper with stories of the hospital walls and doctors, but I will save that for a different day.
I can never change the fact that my chronic illnesses have always dictated how my sail will catch the wind, but I also can’t deny the fact that whichever way my sails guided me, I have always found my place. My different destinations have at times brought me pain, but others blessed me with happiness.
I was always a sickly child, but I became very ill when I was 7. I underwent my first surgery, I developed a neuropathic pain condition, I developed allergic rashes and severe allergic asthma, I began vomiting cyclicly to the point where I needed to keep a trash can beside my desk because I didn’t have time to run to the bathroom. As time went on, my rare diseases progressed… None of the doctors in my home state of Texas knew of my conditions and I was a “mystery” to them. They shoved different pills and medications down my throat, hospitalized me over and over again, but they were just as lost as I was. My family packed up their things and moved to Boston, Massachusetts for what they believed to be the best children’s hospital in the United States. We had so much hope that the move would make things better and I would finally get diagnosed, but again I was passed around from doctor to doctor like a hot potato; I remained a mystery. Fifteen years later, at the age of 22, I have lost my ability to eat and drink, I have a fused spine and I suffer from pain and illness every day of my life. I am finally diagnosed with many rare, degenerative diseases, but finding my diagnoses cost me a normal childhood.
I was bitter for a long time. I believed that I had been cheated and that life was so very hard and unfair. I took it out on those around me.
I said I was sorry because I was. I thought about myself and my attitude not just towards my mother, but towards everyone. I realized that through all the pain and all the suffering, I had a good life that I did not want to leave behind. I realized there were so many things I still needed to do, so many places I wanted to go, and so many people I wanted to see. My mother looked confused, but stayed quiet as I explained to her how deeply sorry I was. When I was done talking, we were both crying and she said something that I will never forget.
“I don’t blame you.”
At the age of 13 I believed I was to blame for my terribly ugly attitude. But today, I look back on that girl, and I understand why my mother responded the way that she did; I understand why she didn’t blame me. I was reacting to trauma through the eyes of a child; my instinct had been to fight so I fought. Now that I was about to die, I didn’t want to fight anymore… I wanted to live. My mother kept her promise and found a specialist in the spinal surgery I needed. He looked at my scans and 4 days later I was on his operating room table and I survived.
Suffering from a rare and misunderstood disease that brings pain and suffering into your life is never easy, but as a child… As a child it is excruciating.
I became involved with a non-profit called TCAPP with my mom after I got that surgery and I made it my mission to help other children like me. I have been helping out TCAPP ever since and out of all the things I do in my life, advocating for children suffering from pain and chronic illness is by far the best thing I do.
Until next time,
Lexi Uslu
