My childhood consisted of constantly being admitted into hospital; I was never out of hospital for longer than two weeks or at least that is how it felt.
It was awful and must have been very disruptive for my siblings and my parents.
There was always a little feeling of guilt deep down inside and at times I felt that I was somewhat a burden to my family. This was no reflection on them, as they never made me feel this way. There was no real consistency in my life, which was not a problem when I was really young but this really started having an effect on me as I started getting older.
My crises were so painful and indescribable; I wished for death many times just to end the excruciating pain that had taken over my entire body.
My family and friends did not make me feel different but I knew that I was and I recognised that not everyone experienced what I had to endure. Sickle Cell Disease and painful crises was all I really knew and that was my life.
My siblings always made me feel special and they always ensured that I was never left out or made to feel different. We were siblings and we were all equal, if they were going to play chicken by jumping across one garage roof to another I had to take part too.
My family were so special and they made my life worth living. I felt like they were all that I really had. They made me extremely happy and always looked out for me continually showing me love while making me feel special.
My art and the skill of drawing and painting was the passion I used to escaping from my awful health. I could lose
myself in my art and getaway from everything around me. It was like entering a calm serene world where everything was wonderful and peaceful.
Today I feel exactly the same; losing myself in creativity and using art as a form of therapy. It is one of the main ways that I deal with having to live with sickle cell disease and it really works for me. My faith and belief in God works alongside my creativity and ensures that I spend time being thankful for all the good things in my life.
Living with sickle cell disease and having to grow up in a society where it was such a rare condition was such a huge struggle. Nobody had heard of this hereditary blood disorder and the fact that in those days it was thought to have only affected the black culture made it even more difficult.
I know that my parents struggled with the fact that they had given me this horrendous condition and they just did not understand how they were supposed to cope with raising a child with this unheard illness.
It felt as if the doctors were also none the wiser about sickle cell disease and I remember endlessly having junior doctors examine me and ask questions behind hospital curtains.
It made me feel like an alien, like an abnormal human being who was fascinating but for the wrong reasons. I would sometimes pretend that I was the star of a TV show or a soap opera and everyone around me including my family were the cast. It was a fun way of trying to deal with some seriously traumatic experiences.
I didn’t feel that I could talk to anybody about how I felt and who would I talk to if I needed too? I just had to get on with things as this was my life and I had to accept it.
There were no counsellors or Psychologists in those days that would even know how to deal with me, because I didn’t even really know what I was dealing with and would completely shut down when it came to discussing my feelings on this matter.
If I have to be honest I had no quality of life and I really didn’t want to live knowing that at any time I would experience this pain that would attack my body with a vengeance.
What had I done wrong, why was I suffering like this, was I really a bad person?
How do you smile and pretend that everything is okay when it really isn’t?
You have to grow to deal with it without even thinking about it because you really have to keep on top of things to survive it all.
You have to try to be strong for yourself and for the loved ones around you especially if you have been blessed with children. But please be careful because you can also appear so strong that everyone forgets that you are not a hundred percent and tend to then lack the understanding and support that you need.
I continue to struggle every day and some days are good while some are not so good. I try to be as positive as I can about life. I stop and reflect on how fortunate I have been on my journey and how thankful I really am. I am blessed with an amazing husband, two wonderful daughters and two gorgeous grandchildren. Nobody will ever understand what this means to me, it is the most awesome things that I could ever have wished for in life.
I can reflect today and realise that I have come so far from those days when I felt complete hopelessness. Sometimes today I still find myself shutting down, wanting to be by myself, on my own. It is difficult to continually be positive and there are many times when anger sets in and I think it is so unfair that I have to live with this condition which will forever control my life.
But I also thank God for the blessings I have and for allowing me to still be living to an age that I thought I would never live to see.
Dealing with these changing feelings and moods is like living on a roller coaster.
I don’t think that I would have made it today if I didn’t have such a wonderful family and such loving, patient parents.
Support is so important for anyone especially when you are living with a chronic long-life condition.