The Cure To No Cure

It took me a long time to accept reality. I don't mean with life in general. I mean who I was as a person. I grew up very confused about so many things and it all started on November 4th, 1990, the day I was born. I learned very early that I was different. Well, let's be real we're all different, but I was different from the people around me. It all started with the way I looked. I was the light skinned one, in the family. I was the one with good hair and the one everyone referred to as pretty. I was the one that went to school and stood out, because of my good hair, light skin, skinny body and pink round eye glasses. This is where and how the confusion started. Why didnt I look like my siblings? Why was my hair different from the other girls? Why was I so skinny? Why did people keep saying I was pretty? Those were the questions I wondered, but never asked. It became more of a reality that I was different, when people started asking me Why do you walk like that? I became more confused, because I didn't understand the question. The reason I didn't understand the question is because I wasn't aware that I was walking any different from anyone else. I was living with my mom and seven half siblings. We were so poor and all I remember was my mom struggling just to make ends meet. She worked so much to the point where she was never home. We were left alone a lot and eventually child services got involved. We were all split up in foster homes. How did this affect me? It added more confusion. Why can't we go home? Why can't we see our mom? How long do we have to stay here? My mom was a single mother. So the system said if the kids can't stay with one parent, then maybe they should try staying with the other parent. Well ironically, seeing how we all had different fathers, my mother wasn't sure who they were. So while the father search was in progress, we were all in and out of foster homes. Talk about being confused, not knowing who your father is. This is something no child should have to go through. I would sometimes ask my mom about my dad and all she would tell me is that he was a security guard and his name was Spider. Oh and that he was an identical twin. I was just happy she knew who my father was. In and out of foster homes, my sister Tasha, brother Donta and I moved in with my aunt. I guess my aunt noticed the difference in my walk as well, because she took me to the doctor. I had a muscle biopsy and was diagnosed with a muscle disorder called Glycogen Storage Disease Type 2, known as Pompe disease. It's a disease that damages muscles and nerve cells, throughout the body. So in other words, as time progress, so does muscle weakness. I was diagnosed at the age 12, so I really didn't know what it was nor did I take it seriously. As serious as this disease is, by it being a terminal illness and all, I'm surprised I didn't receive any special treatment, at least information and preparation for what was to come. Instead, I went on with my life. Who knew it was only the beginning of my struggle? During that time the system found my father, which by the way turned out to be the identical twin, Soul. I moved in with my dad, started middle school, became weaker, started using a wheelchair, became weaker, started high school, became weaker and was in and out of the hospital. I lost all mobility to walk, I graduated high school, planned to go to college and live on campus, only to become severely ill to the point where I go flat lined, in the hospital, God brought me back. I earn my degree online. I am 24 years old, wheelchair bound, have poor respiratory, extreme muscle weakness and am in and out of hospitals. But, I have a BA in psychology and a positive attitude. Yes, my life is a constant struggle suffering from a terminal illness, but this book isn't about me, it's about you.