Invisible Bully (eBook)

Thriving In a Life With Sickle Cell Anemia

Christopher A. Davis (Autor)

eBook Download: EPUB

2023 | 1. Auflage
146 Seiten
10-10-10 Publishing (Verlag)
978-1-77277-553-2 (ISBN)

BROADEN YOUR MIND. WHAT YOU DON'T KNOW OR CAN'T SEE MAY HURT YOU TO DEATH. Clear communication is very important. You will learn what living with Sickle Cell Anemia is like, from a first-person point of view. Everything isn't as it seems. The true strength of a person comes from within.

It took forty plus years of intense agonizing sacrifice and struggle for Christopher A. Davis to heed the call of the Most High. In doing so he found his purpose in producing an extraordinary piece of work. The Invisible Bully: Thriving in a Life with Sickle Cell Anemia tackles the issues that one may face with the disease head on. This book shows the importance of having inner strength and fortitude, a positive disposition, understanding the power of faith in God and in yourself, and more. There is work that must be done for anyone living with a chronic pain disease and or mental illness, if he or she wants to live some semblance of a normal life. The Invisible Bully is exactly what Sickle Cell is and can be for some who are born into this unfortunate circumstance. But there is an upside to having the right perspective when viewing the world. The ability to see the silver lining around the gray clouds. Loving with no strings can lead to a different type of pain. See into the mind of a man who feels and endures with such depth, that his heart rivals the deepest oceans. Creativity, humor, wisdom, pain, tears, all wrapped up in a healthy dose of reality, gives readers a totally unique opportunity to learn something new. Perhaps you will too!!

TRIGGERS

Being the only one in my family with sickle cell anemia, from close to distant relatives, made it extremely hard on everyone else around me, causing undeserved jealousy and resentment from various people on and off the family tree. But when it came down to making sure I was taken care of, protected, or had to go to the hospital, there was no hesitation, which is why it was confusing how the doctors concluded that I was unable to be as sick so frequently and for the length of time each “crisis” lasted. There were numerous times I stayed home to battle the disease due to the number of hospitalizations piling up, and it began taking more of a toll on my mental state than on my physical state.

My demeanor was that of a soldier coming home after a life full of warfare, full of anger and hatred for being cursed with life, while memories of the fallen and actual unforgiving pain haunts dreams night and day. Even some decisions being made in everyday life are affected. I don’t know everything our soldiers encounter or the burden they carry, but I can relate. Thank God for them. Those with sickle cell anemia are not allowed to join the military—trust me; I’ve tried twice, with no luck. I guess my fight would be more of a distraction that could get in the way of me being all that I could be. There is no way I want to be a kink in our armor or hinder the chain of command for one second on the battlefield. There are several triggers that bring on a “crisis” from what I know:

• Exposure to extreme cold/heat

• Dehydration

• Overexertion

• Poor diet

• Smoking/drinking

• Stress

These alone hinder peak performance in everyday living, let alone in life-or-death situations. There are a few other triggers that can lead to hospitalizations even when the numbers look normal, of which most people are not aware or have a clue about, such as:

• Change of environment

• Weather/season change

• Climate fluctuation

• Infections

GIFT AND A CURSE

Then again, there were examples of variable change, where everything was going correctly and all i’s were dotted and t’s crossed, but still the pain superseded the proactive intentions. I was hydrated and my blood count was up; there was nothing to stress about. There was no sign of infection, and I was eating properly; the days were beautiful as could be, etc. But there it would be, creeping up one of my arms or both of my legs, slowly reminding me who’s in charge of our existence, and once again informing us that we are not to enjoy this wonderful day— and who said it was a wonderful day in the first place? Whatever the topic may or may not be, it isn’t unless the pain deems us fortunate enough to see when it subsides.

Please bear with me and have patience on this journey. The goal is to not only speak for those who can’t find the words, but it is also to get you to understand that their voice deserves to be heard—the people who were made to feel like the pain they are going through doesn’t matter to the rest of the world. I am here to let everyone of every shape, shade, county, or country in every corner of the world know, WE DO MATTER. We are not a hindrance or a burden. Yes, the situation we (who have this disease and the people who love and care for us) are in can be an inconvenience. Also, it can be accompanied by (easily unnoticed) gifts and blessings, if we’re not looking in front of us.

There were days and nights where moving was almost impossible; so much so that my family and whoever I was with at the time, thought that I was feeling sorry for myself. To see the looks of pity and/or disgust, for them to think there was a possibility I could or would be lying there in a self-induced rut, made me feel abandoned. Then there were the people who felt that there was no way for the pain to be as dramatic as I made it out to be. Not being able to communicate the full scope of how sickle cell pain feels, is proving to be most difficult. The scale of 1–10 does it no justice. There is no way I could fake suffering on such a grand scale. Being accused of this put the feelings of safety and love at an awfully low point in my heart and mind. I haven’t faked pain a day in my life. Being in the position to endure, gives me great pride and self-respect— not so much that it boosts my ego, but perhaps it has given me the strength to, above all, stand in the face of adversity. It gives me the confidence to survive in this world.

Blood tests and urine samples show everything from red blood cells and white cell counts, to the level of S cells my body has at any given time. But the one thing it cannot gage is the amount of pain a person is fighting. No test can, despite the energy placed into this process. I call it a process because it takes the patient, the nurse, and the doctor to communicate before medication can be administered to combat the pain. Trying to fight for your life and answer/play a game of one hundred and forty-two questions is quite the task; not to mention that it takes the mental capacity away from the physical fight that is taking place. The person who has the disease must focus on not sinking into the dark emptiness, where pain, violence, and insanity feeds happily on the souls of those who were not strong enough to withstand the pressure placed on their shoulders.

Too many beautiful young men, women, boys, and girls have had their lights lost in this war between forces above our understanding. There are a few who comprehend what I’m speaking of, and I appreciate their inquiries. Basically, we are given things to keep us grounded while here on Earth in these temples. Some have greater burdens to bear than the man or woman next to them. Everyone will have to fight, whether it be mentally, physically, spiritually, or emotionally. There are the cases where we can live with a bit of each one. Depending on how the individual is raised or programmed to think, this will determine the manner in which he or she is taken care of by the medical staff and facilities, the people they may run into as they are on their journey, and by family and friends as well. In everyday life, people are bombarded with all types of thoughts, questions, feelings, wants, and needs. With this, there must be adjustments made to attitudes, mindsets, and perspectives. Without resets and/or self-checks, chaos could be inevitable.

WHO IS AFFECTED BY THE DISEASE?

Over and over, there they are: that row of faces drawn in pencil, which is supposed to convey to the nurse who is looking at my facial expressions, the amount of pain a person is experiencing—as if to find a correlation between the two to confirm the level of honesty or sincerity I am relaying about what can only be described as the worst feeling I have physically felt in 40 years of life. Have you ever been in a ridiculous amount of pain that made you feel like three types of dog shit (shredded, scraped, and beaten), while having to speak to someone who has already prejudged you solely off the way you look, who says “you look good?” Now, imagine yourself in the same scenario but feeling even worse, to the point you’re in need of hospitalization. The determining factor in you receiving (adequate to everything you need) initial treatment is based on this chart of faces and the way you look. Then the nurse asks you, “How do you feel?” You respond, “The worst,” only to be told, “Well, you look good,” after which you are left in the waiting room of a hospital or doctor’s office for 3–4 hours, with serious things going on inside your body, one or two life threatening to be exact. How would that make you feel? As a human being, what is going through your mind while reading these words? Along with the lack of sleep from constant physical and psychological torment, the people who are paid to help provide medical treatment left you to fend for yourself, but you aren’t allowed to use outside medications.

Making it to the ages of 14, 18, 21, and 25 is an accomplishment in and of itself. There have been a few redundant scenarios where I went through Acute Chest Syndrome, back-to-back-to-back, and then just plain old pneumonia. Acute chest syndrome is the combination of a sickle cell “crisis” in the chest area/lung(s) and pneumonia, to put it plainly. Vaso-occlusive “crisis” of the pulmonary vasculature is a condition that is common in adolescents and adults. Because of its reoccurrence so often, there is permanent damage and scar tissue in both lungs, later compounding the pulmonary problem that gradually appeared.

Being blessed with having so many people praying for me and taking care of me properly, my situation could have been much more severe if not for the grace of God. Include being privileged with the gift of longevity and not being reduced to feeling sorry for myself. This subsequently removes the negative effects and energy that could possibly plague the minds of anyone living with an illness. Beware of the collateral damage stuck in the corners, cracks, and crevices of families fighting the everyday fight that gets swept there and compartmentalized. It can pile up to create noticeable separation in places where there shouldn’t be any.

In summary, don’t neglect...

Erscheint lt. Verlag	28.4.2023
Vorwort	Raymond Aaron
Sprache	englisch
Themenwelt	Studium ► 2. Studienabschnitt (Klinik) ► Humangenetik
ISBN-10	1-77277-553-3 / 1772775533
ISBN-13	978-1-77277-553-2 / 9781772775532

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