Tonya's Sickle Cell Diaries

I am 3 days away from my delivery date. At that time I will be able to see and hold my own daughter, something that I thought was impossible for my life just a few years ago. It has me thinking back to when I was a child. I was born with Sickle Cell Anemia. Most people today call it Sickle Cell Disease. I have always looked at the difference as the difference between the two types of Sickle Cell. Type Sc(recessive) and type SS(dominate). So if Sickle Cell Disease means that you had the recessive type, and Sickle Cell Anemia meant you had the dominant type. At least that’s how my child mind perceived it. Now I know that the 'Anemia' part means that on top of having Sickle Cell I am anemic too.

In my childhood my family and I had to find out the hard way that the world didn’t know much about Sickle Cell Disease at all. Therefore, my late brother and I involuntarily became the guinea pigs of the Sickle Cell community. I have briefly remembered the day that it all started for me. I don’t know if that was the same day it started for my late brother.

Anyway, as I recall my Mom was doing my hair. She loved giving me four large braids in hair. She would part my hair into fours then start in the front two braids on each side of my head. When she got to the back however, I started to feel funny. There was a tickling in my right arm, and my head started to hurt and I was dizzy. I told my Mom, and she told me to go see my Dad. He looked me over real quick, and said you don’t look much different but let me know if anything changes or gets worse. So I went back upstairs so that Mom could finish my hair. As soon as she started again the dizziness had become ten times worse. But Mom had to finish my hair so she said let her finish and if it’s still bad then that’s when she’ll let Dad know in the hope that it would all pass, of course.

Unfortunately, it just got worse. I was barely able to keep myself sitting up while Mom finished the back two braids. As soon as she finished I found myself having trouble talking. I can’t remember which side it was but half of my body felt numb. I remember my Mom looking at me and her expression was very scared and worried. As I laid down she hurried to get Dad. He sat me up, looked me up and down good, asked me questions. I remember not being able to answer his questions. My words; I was forming them in my head, but they didn’t come out right. That was when he told Mom to get my coat for me because he was taking me to the hospital. He wasn’t sure what was wrong, all he knew for sure was that I wasn’t acting like myself; I wasn’t acting like his six year old baby girl. He took me to Children’s Hospital in Washington D.C. even though we lived in Silver Spring, MD.

I don’t remember much of the E.R. visit. Just then we quickly were on our way back home. But even when we got back home Dad wasn’t satisfied with what the doctors said. He took me back to Children’s again, and again they said that there was nothing wrong with me. I guess they thought that all I needed was rest and after that I would be fine. But once again, Dad took me back a third time. This time Dad insisted that they take a closer look at me. Once they did they discovered that I did have a stroke. I remember being taken to the back room of the E.R. and immediately given fluids and a bed to rest in.

I was scared and I didn’t want Dad to leave my side. But the doctors insisted that they talk to him privately. For my sake they talked to him at a table right outside the door, so I could always see him. The last thing I remember was Dad coming back to my bed, and He told me that they were going to keep me in the hospital overnight. I have vague memories of being in the hospital, but I don’t know if they are from this first time of my first stroke or from the countless others I have had in my life.

Years later when I was about 12 years old Dad told me what the private conversation was about: The doctors were asking him how he knew that I had a stroke. They were baffled that he knew the warning signs of a stroke and they, the doctors did not. He said that he didn’t actually know that it was a stroke. All he knew was that I wasn’t acting like my usual self. The doctors wanted to know every detail. From how differently I was acting; from my movements, to what my body was doing, to how I was speaking. From that conversation came the warning signs of a stroke.

From that time to when we became adults; when the doctors had a question about Sickle Cell Disease they called my Dad. He is always looking for a natural way to deal with Sickle Cell Disease.