I am not my sickness and I will never be
Two months after my 18th birthday, I was diagnosed with severe aplastic anemia, a rare blood disease in which my bone marrow does not make any blood cells necessary for me to survive. That includes red blood cells, white blood cells and platelets. According to the Aplastic Anemia and MDS International Foundation, about 600-900 people are diagnosed with it each year. Aplastic anemia is not picky either; it can affect anyone, at any time and at any age, whether it is genetic or not. No one knows exactly how I acquired the disease due to the many ways to contract it. I am thankful to God that it was not genetic in my case. I could sit here and tell you about my super sad story, but instead I am going to explain to you why it really is not such a sad story. Yes, what my family and I have been experiencing is not easy and can be extremely emotional, but I wouldn’t change a single experience.
In the beginning, my journey was the most devastating thing ever, especially to a young adult who was just getting ready to go off to The University of Texas at Austin and who had worked so hard to accomplish that goal. I had to watch all of my friends and my boyfriend at the time experience what I was supposed to experience. I did not always have such a positive attitude about my situation and it was a struggle to accept things were not going the way I had planned, but over time I started to realize that everything was going to be okay. It would not have been possible for me to have this outlook if it were not for my faith in God and my encouraging support systems that made me focus on the positives in my life and reminded me that I was never alone. I still allow myself moments of tears and thoughts about how hard it all really is and sometimes I do think “why me?”
I’ve gone through some things that most people my age never have to go through or never even have to think twice about. How many 18-year-olds have to wonder whether or not they will ever be able to bear children? How many are forced to make decisions about freezing their eggs for later use? Out of everything, that has been the hardest question. I want children so badly and I cannot and do not want to picture a future without children of my own. I now have premature ovarian failure, premature menopause and osteoporosis due to chemotherapy and radiation, so I will have to wait and see what my future holds.
During my senior year of high school, I had no idea what I wanted to do with my life and then I wasn’t given much of a choice. My life is not my own. I was not aware of all of my potential. I knew I was special and I always knew I was destined for great things, but I never imagined things to play out this way. I was chosen as homecoming queen my senior year and I was accepted into a well-established university; everything was going well and nothing could ever prepare my family or me for what was to about to happen.
I have always been the healthiest and most athletic out of my two younger siblings and I rarely even caught a cold. Being told I have a rare blood disease was scary because of the unknown. I was not worried that I wouldn’t make it through this part in my life; I was more worried about what I was no longer capable of doing. My lifestyle had to significantly change. I could not finish my senior year at school, I missed out on the typical experience of prom, I could not hang out with my friends and I could not go off to college anymore. It will be two years since my diagnosis this March, but because of these things and so much more, I have discovered the true meaning of family and love, and have determined what I want to do with my life and exactly how I want to live it. This journey has built up my self-confidence to extreme heights; it has taught me how to become a prisoner of love, to forgive unforgivingly and to lose all of my pride. I want to do something that makes someone smile and do anything that gives back. I am determined to inspire and spread awareness, not only about my diagnosis, but about my journey.
I have lost all of my hair twice and shed my skin about a thousand times. I have gone through intense chemotherapy and radiation treatments. The type of radiation changes my insides forever and makes me feel like I am being microwaved. I have had two bone marrow transplants, sometimes the only cure for aplastic anemia. Those who have selflessly donated their blood and their time to people like me give me so much hope for the future. I am forever grateful to the beautiful people who have shared themselves with me. I have fought many rounds against viruses and infections during my short career of disease fighting. I have survived a fungal infection in my sinuses and lungs with virtually no immune system.
I love to sing, dance, create and most of all, practice yoga. I see things so differently now and have a new perspective, too. I hear music differently, read differently and practice yoga differently. Yoga really helps keep me going. I have lost a lot of physical strength because of repeated, lengthy isolations. I dropped 25 pounds during my second transplant. I looked like a little skeleton walking and dancing around everywhere. I lost my appetite as a result of the chemotherapy.
Through this experience, yoga has become one of my passions. The ample amount of love and support I receive from the yoga community encourages me to keep pushing. Fellow yogis remind me of the reasons why life really is such a beautifully unfair thing.
So I do not have such a sad story after all. I am not my sickness and I will never be.