There is really no easy way to put in words, the emotional side of “Sickle Cell”. I personally believe it brings me to a place of darkness repeatedly. As I think back when I was a child, and hearing various people, doctors, friends, and family telling me to be careful dont over do it, or I wasnt going to live long, or never have children….etc~
Watching and listening to the nurses while I was laying helpless in the cage looking pediatric bed talk negative about the little black children with sickle cell and how they wished they would shut up screaming. I even remember a nurse one night giving the kid next to me another dose of morphine just so she would stop yelling and screaming and be quiet and go to sleep. (I am so thankful now that my mother prohibited them from giving me any type of narcotic that would sedate me at such an early age…my organs would really be messed-up by now if she had done so)
Over the years I realized I became negative when it came down to telling me what my abilities was. If anyone, anyone approached me with the attitude of, “You cant”…I would go into this inner rage of, “I’ll show them what I can and can not do”. From teachers who looked down at me since I missed so many days of school, to even my parents and I abruptly moved out their warm, loving, home at the age of 18 and had to move back with my son years later.
Each time I had a violent crisis, dealt with discriminating nurses, emergency room staff, mean-spirited employers & supervisors, un-carrying so-called friends….this, “Dark Side” of My Sickle Cell would appear. Like clock work!! My attitude would turn dark & nasty….my sharp tongue would spring into action and my temperament would sometimes become very short and out of control, and my mind would start to race on how I could prove them wrong of my abilities.
The mere fact of being in a bed hooked up to monitors, oxygen, and a variety of other medical-gadgets, in the beginning left me with an empty, non-emotional feeling. “Blank” on the inside & Out! I was so so so angry about the pain,constant trips to the hospital, the lack of compassion from so many, and the helplessness I experience over and over and over. As the years past I began to recognize this “Dark Sickle Cell Diva”….. Beautiful on the outside but a caged, wild, angry injured soul on the inside.
Understanding the mental, emotional, & physical side of Sickle Cell was not a priority back in the 70s…Just keeping the children alive so they could make it to adulthood was. Eating healthy, and healthy living did not play a significant part til the late 80’s early 90’s.
Over the years I have come to understand the big picture of living with this genetic blood disorder. And realizing it has driven me to be overly aggressive in life at times, cold, distant, angry, detached, and extremely independent!! In the past I have even been called, “Evil” by a very close family member….and in all honesty I know for a fact if they and the rest of the people out there experience pain on a daily basis like most of Us with sickle cell does, their disposition would not be sweet like honey.
It is not easy having a pleasant disposition and live with sickle cell anemia, constant pain, constant negativity surrounding sickle cell, the ups and downs of having the ability to get things done for it to be taken away from you in one night of sleep or something simple as grocery shopping or a family outing. The roller coaster of tiredness and lack of energy. Living with the constant fact of, “Death” as a next door neighbor staring out the window at you…..”waving”~
So although I blog about healthy eating, and positive resources and encouragement, I to have a “Sickle Cell Dark Side” which I am not totally proud about but have come to embrace it and understand it and somewhat taken control of it….well I’m a work in progress~
((Final thought: Sickle Cell Pain is actually Hell on Earth))
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