By Maria, Beta-thalassemia, United States, February 25, 2021
Keep On Smiling
“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemia, diagnosed at 2 ½ years of age. The premise of my disease is that I am missing the gene that allows me to make healthy red blood cells and therefore need to be chronically transfused. Since my diagnosis I have received over 1700 pints of blood, which has caused many side effects and even secondary diseases such as organ failure of my spleen and gallbladder, iron overload in the liver and heart and as I got older severe osteoporosis due to mismanagement of Thalassemia.
Back in the 70’s we were told and believed that not only we would not live beyond our 20’s (some doctors even said teens) but also we would not live a good life. I remember one doctor who said to the young resident doctors while making their rounds “we tell the parents not to expect much from them”. This talk was very normal back in the 70’s and 80’s but we soon learned, it was ABSOLUTELY WRONG. It was then, when the young resident doctor lagged behind, he put his hand on my hand and asked me “what are you reading”. I was shocked – someone talked to me like a human being? I wasn’t used to such dignity, such humanity, and such respect. In those days I wasn’t even worthy enough to hear my name, I was my medical record number. “I’m doing my Greek homework and reading The Odyssey”, I replied with a very low shy voice and a smile. “Do you like this book”, he asked. I nodded yes, with a bigger smile and added, “Its mythology and it takes my mind away from being here”. He squeezed my hand and said “You have a beautiful smile; Keep on Smiling”.
This is my therapy, my cure, smiling through my pain, smiling through life.