By Faith Love (RIP)
Pain is what I do know best in my life. I have suffered a lot of physical pain due to my red blood cell disorder as sickle cell is defined. My life has not been a walk over because most of my dreams haven’t come true as yet because sickle cell has somehow retarded some of them. When I think I am at a point of achieving some of my dreams my health has always found a way of getting me delayed. I had to miss school for three years because of bad health.
It has been through Faith and God’s grace that I am alive today. People would look at me sometimes with my yellow eyes and wonder what was wrong with me.
I have heard many say discouraging, disturbing and terrifying things about my condition and the disease in general. “she will never make it to five they said when I made ten years, they thought that that’s as far as I can go, when I made it to sixteen and now to twenties, they are speechless and realize their theory doesn’t work. Little did they know that this added emotional pain to my physical pain.
My life seemed a weak. All the people’s negativity is actually nothing compared to the pain I go through as a sickler. For the rest of my life I have to be on daily medication. Since life is dearly loved, this can be put up with.
What any sickler understands most is pain, forget about the labor pains that the ladies go through during delivery its worse that when it comes to sickle cell because the labor pains are very much bearable. Sickle cell gives me the perfect description of pain a more realistic meaning compared to the dictionary meaning. Regardless of age, you wail like a little baby when crisis sets in. It feels like all body bones have been broken or fractured. It feels so terrible that I just can’t imaginatively explain the feeling.
I have been taken to hospitals many a times almost unconsciously lost in pain. I could not afford any body movements. When I get to hospitals, I have all sorts of things running through my mind always wondering what more bad news the doctor is going to break to me. Considering the complications that come along with the disease the leg ulcers, bone infections, body organs are at a risk of damage anytime, nerve injuries the risks are endless.
Each day in life of a sickler is lived by God’s grace. Personally I can say it has all been God and family support they tirelessly stand with me in the darkest of my days. There are so many of us each with a different story to tell, though the stories and experiences may differ, there is always a common factor in all of them the sickle cell anemia crisis experience.
I have personally had two very disturbing experiences. The first being massively transfused until my hands could barely take it in my blood count could not go up and the pain seemed so constant. I remember staying in hospital for more than a month , feeding on morphine, getting pricked so many times because the veins on my hands were traumatized and in the process veins blocked and the cannulas could not do their job because I could not bear the pain in the swollen veins not to mention the aching hands.
I perfectly remember surrendering my feet to do my hands job. I had my blood transfusions through my feet it felt like there was a vampire within me. I got more than five units of blood for the start to my and to the doctor’s surprise when they checked again to see how much blood I had, I had about 2g/dc. At this point, I had to go back to have these transfusions afresh. I was so frustrated that I gave up. I just watched and listened to whatever decision the doctors came up with because deep inside me, I had given up the fight I don’t see any other way out of this. What I perfectly kept count of though was the amount of blood that my body received I got more than 20 units of blood and when I took a good look at myself in the mirror I can never forget what I saw: a skinny yellow me from head to toe. I had never been so scared of me like I was at that time. I can never ever forget the yellow version of me. All there was a bloodless yellow me all smelling of morphine.
The other terrifying experience is when I had to spend a big time in hospital being treated of an unknown infection on the most painful drug I have known to date. There was something disturbing to me about the time these drugs were administered to date. There was something a bit stale about the time to date. I am still a little biased about 12am, 12pm, 6am, 6pm each time those particular hours strike, and everything went dead silent. A chill of cold wind gushed through the ward I was admitted in. Everything including the time stood still and my heart almost pumped out of my chest and at other times it seemed to stop at the sight of any medical personnel that approached the bed I lay on.
To date when the clock strikes those particular hours, it feels like the nurse is approaching me to administer that very painful drug. My worst night mare in this whole experience was a student nurse administering this drug in a rush. I recall her telling me,” Faith, please don’t cry because if you do, you will wake up the patient in the next room.” She said this because she knew how painful the drug was and knew that I cried each time I received this drug. As if we didn’t have equal rights as patients! She left me with a permanent scar of a nail less thumb which reminds me of her, hospital and sickle cell anemia as well. Am grateful to my mother for sticking with me through all these nasty experiences of my sickle cell life.
Now that am here, I am not giving up. I am set out to achieve all my dreams because I honestly deserve it. So I will go for it all and I am not letting people or sickle cell put me down because Iam WARRIOR, A SICKLECELL WARRIOR.