My struggle

I've been meaning to write about this but when I started I did not feel comfortable so I stopped writing. I don't feel 100% comfortable but I won't so here it goes.

(I know that in life anything can happen because tomorrow is not promised but I'm a realist)

My daily struggle is with Sickle Cell Anemia Disease. For those of you who do not know it is a genetic disease where the red blood cells are malformed because of abnormal hemoglobin. This causes a person with the disease severe pain. In the picture above it shows you a normal red blood cell (A) and what my red blood cells look like (B). This disease came about because of malaria. I call it the "natural defense" mechanism because sickle cell anemia naturally protects the body from malaria. So anyone like myself cannot acquire malaria. Not everyone can inherit this disease people in places such as Africa, Caribbean, Mediterranean, and other countries with a large population of mosquitoes carrying malaria can only inherit this disease. I don't want this post to turn into a health/biology lesson so if you want to learn more about it go to THIS LINK (it's a dot org so they know what they are talking about).

I was diagnosed a little before my first birthday. Although my struggles with constant pain has not been easy I am grateful for the knowledge and patience my family has had with me. 

I was lucky enough to be diagnosed at a young age because after I was diagnosed my mother did everything in her power to learn about my disease. I am grateful for the knowledge and patience my family has had with me because my struggles with constant pain has not been easy. The doctors told my family I probably would not live past the age of 5. When I surpassed their prediction they told her I wouldn't live past the age of 8. Today research says that the average sickle cell disease patient lives to be 35-45 years old. 

At such a young age I learned really quickly about death and for some reason I was never afraid. Then I spent many nights in the hospital and got so accustom to the hospital that I used to call it my second home. I look like a typical young adult so when I tell people about my struggle they are in disbelief. It becomes difficult for me to tell them I'm in pain because someone who is sick usually looks sick but I do not. I've accomplished a lot in my life and I feel like there is more for me to do but in the back of my mind I'm worried about my demise because of how it may impact the people around me. My immediate family tells me they will be devastated. I would be heart broken if it was someone I was close to too. For those reasons and some others I've chosen not to get married and/or have children because I do not want to devastate them by leaving them. I've had a lifetime to come to an understanding with my death but my partner and/or children will not have so much time.

In some relationships my partners have pointed out that I wasn't being fair because I was keeping myself from them in order to protect them when they don't want to be protected by me in the first place. I'm probably not being fair but it's also not fair to die young either or to have a broken heart. In the process I'm also protecting myself as well because I don't want to watch their hearts gradually (or not so gradually) be broken by me. All the time I feel like I'm hurting someone for the simple things in life and that hurts me. Knowing that my dying would hurt someone would crush me.

Now at 25 I'm doing pretty well compared to most people like me. And although it feels like a new beginning I'm remembered everyday that my struggle is a continuation before an ending.

Just exploring me....