September, they remember us then

My heart sings, it just cannot stop. I feel as though joy was a pellet that i swallowed and it burst in my stomach. When it burst, i felt the waves of its contents run through my body. That is how i feel this morning. Like a thing erupted in me and it is causing me to have this surge of energy and joy.

People often say to me that i look like i am one of those people whose lot in life is to carry the weight of other peoples burdens. I am usually quite solemn and reserved. I like people but i do not like hanging around them much. I find that interaction with many at a go causes me to withdraw into myself. That everyone is fighting to be heard and no one listens to anyone.

My father always said no one would bury me or come to my wedding. My answer always is that i plan to have a small intimate wedding and that can be just two people, that is, if i do get married. And as regards to the funeral, i will be dead, i will have no cares for the attendance or lack of. He often shakes his finger at me, this last born child who refuses to be like him.

I have never won an award or a thing. I am one of those people who when they walk into a place and they say one in two million people will walk into this room and come out with a cold, i will be that one in two million people. It is as though luck never smiles on me. Not that i believe in luck. I know only that the maddening things happen to me, rarely the good ones.

You must be wondering where the joy is from then.

My name is Chiselle Gertrude Kisimbe. I am 37 years old. No i do not have children and i am not married. You are wondering why i am not married and i am wondering why everyone wonders that. It is as though it is written somewhere in the rules of life that by the time someone gets to my age they should be married with children. But that didn't happen for me and i got over it.

It is as though it is my fault that i am not married. What can i say? People just do not find me attractive. I guess also because i am sick. Who wants to have a wife on watch? The one that you have to constantly worry about and watch for any signs that might mean you will be spending the night in the hospital. Also because people fear that the children i bring forth might be sick.

I have lived with sickle cell disease all my life. I still live at home. Mostly because when the series of crises come the pain is too much even after i leave the hospital. Also because it is quite expensive to be me so rather than rent a place and feed myself, i ride on my parents kindness.

It was so bad a few weeks ago, the doctors said they were going to start me on hydrxyrea. I didn't even try to understand it. Over the year i have read up on this disease but to be honest, it gets depressing after a while when the success stories around you get fewer. Two girls in the recovery group i am in died recently. One was 17 and the other was 28. I have never prayed as much as i did then.

At the start of September, i was back in the hospital on a ventilator for two days as they forced oxygen into my lungs. I was there for about 14days. My parents didn't know, I told them that i was at a friends house the first night i had to spend at the hospital. I feel that i am too old for them to be sitting by my bed and holding my hand. Besides, they get more pained than i do and that pains me even more. They found out later though when they called my friend and she didn't know where i was. My mother called the hospital and they told her. I woke up and there she was on her knees pleading with God. My father had his hand on her shoulder and he was just staring at me. They thought for sure that this time i wouldn't make it.

It is September and it is the month when people talk about people like me to let everyone know we exist and what happens in our bodies. I was born on the 15th of September. That is today. When i woke up, it hit me that I am 37 and still alive! I feel like i am winning. The feeling of victory is a beautiful thing, it is like an electric shock, a happy one, if there is such a thing, running through your body. My heart sings.