By Josephine Bila
My story of victimization began when I was six months old. That’s when I was diagnosed with a rare, incurable genetic illness called Beta Thalassemia Major. My parents were told that my body could not produce functioning red blood cells on its own, so I would forever need to receive weekly transfusions to remain alive. It’s also when doctors told my parents that I would not live to see my teenage years.
The strain of this news forced my parents to make the difficult decision of keeping my condition a secret from everyone outside of our immediate family and my schools’ faculty members. They had hoped that society would treat me like a child who didn’t have a medical condition. Unfortunately, my teachers didn’t allow that to happen.
So, from the age of six months, my mind began to receive programming that I would always be at the mercy of doctors, medicines, and needles.
As I grew older, I made sure to abide by the rules of my parents and doctors, because they were the people who kept me safe and alive. I thought of myself as odd and extremely different than everyone else. My teachers and peers reflected my inner beliefs of self doubt and hate by telling me I was not good enough to be a part of their social circles, not bright enough to be a good student, ridiculous for smiling because I couldn’t possibly have a joyful life.
My body constantly required that I visit the hospital for blood transfusions and other medical procedures, so I found it hard to believe that I was more than my illness. Nevertheless, I tried hard to prove that I was someone worth knowing. I dedicated myself to learning and growing. The negative statements spewed by my teachers and peers fueled a fire in me that propelled me through the useless wretched narrative playing in my mind.
As I defied my early doctors’ expectations by entering my late teens and early twenties, I tried to find myself in the men I dated. In my eyes, someone with a challenged life couldn’t possibly step into the world without a better half. I graduated from college, then graduated with a master’s degree and got married shortly after, at the age of twenty-five. The relationship ended when I turned thirty.
My divorce was the event that turned my inner beliefs upside down. I derived self worth from the man I married. How could I possibly depend on myself for security and comfort? Who would ever love me again? My mind churned until I broke down and had a panic attack on the way to a transfusion appointment. As I neared the hospital entrance, I stopped dead in my tracks, backed up against the brick wall of the building, looked at the beautiful blue sky, then down into the darkness of my palms. I cried a pain that I had never expressed before; a pain that I had been holding inside of my chest for a lifetime.
When the panic ended, I looked back up at the sky and realized that there was something bigger than me that I was forgetting.
I reflected on all of the challenges other people said I would forever be a victim of and saw that they were all wrong. In that moment, I knew that life on MY terms was beginning.
Several weeks later, I mustered up all of my courage and began to open up about my illness to friends and colleagues. I needed to know that people would love me even after they knew everything about me, and they did. Not only did they love me, they cherished me. They taught me that I needed to be kinder and gentler to myself. As I opened up to the people in my life, life began to open up to me.
Around the same time, my mother told me to read Eckhart Tolle’s book, A New Earth. After doing so, I cried exhaustively at the realization that I was so much more than my thoughts and negative brain chatter. This is when I began living life as an observer of my mind. I learned how to stop myself from thinking negative things and turned unhappy thoughts into moments of quiet through intense presence and focus. I then began reprogramming my mind with positive affirmations.
Several years later, the power of the “O” struck again. Oprah introduced me to Kris Carr’s documentary Crazy Sexy Cancer. The movie inspired me to change my diet. I converted to raw veganism and watched my health grow stronger and my hospital appointments diminish. I went from receiving blood every other week as an adult to going every three weeks.
As I continue to trust, love, and respect myself, I continue to say “yes” to life. And life has been responding with an overwhelming “yes” to me.
This year, I decided to give back to the world in a big way. I met Kris Carr and told her my story. She held my hand as I spoke, and then asked if I would share my story with her readers. Going public with my illness took more courage than I ever thought I had. I was terrified and made myself sick over the idea of telling the world my secrets, but I’m immensely happy that I did. People I never expected to meet have introduced themselves to me, while others have told me that my story was something they needed to hear.
As if that wasn’t enough, the FDA just recruited me to work for them as a patient expert on the topics of thalassemia, diabetes, and osteoporosis. I’m also producing a documentary called What’s My Count? that will showcase my life in the hopes that it will save young people who struggle with chronic (potentially fatal) illnesses from feelings of self-hatred and worthlessness. I want chronically ill kids to know that they are bigger than the circumstances from which they were born. Everyone can reach their full potential, regardless of what other people might tell them. We are all loveable and worthy of living the lives we desire. Say “yes” to life by loving yourself first. Life will always respond with a resounding “yes” when you do.
*Photo by morberg.