The Invisible Bully: Thriving In a Life With Sickle Cell Anemia

By Christopher A. Davis and Raymond Aaron

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!!

• Language: English
• Publisher: BookBaby
• Release date: Apr 28, 2023
• ISBN: 9781772775532

Book preview

CHAPTER 1

IN THE BEGINNING

"Some people were born to become

doctors and save lives. Others born

with outstanding physical strength,

to build foundations that withstand the tests

of time. Then, there are the few who

are born to fight and endure such pain

many won’t ever know."

1

WHO THREW THE FIRST BLOW?

Countless nights being awoken by a horrible feeling, the most intense internal ignorance in physical form any human can endure… It is so relentless and stealthy in its attack, it is truly unbelievable. The pain that I am describing cannot be seen in any way; therefore, its victims are unable to show who or what this assailant is. From a firsthand perspective, there is very little to be achieved by trying to describe an invisible terror in detail. There may be a lot of undocumented information about how difficult it is to live with a disease, but I’ll try my best to be accurate.

Being born with any kind of illness can be a lot to deal with in and of itself. Until a few years ago, I was unaware of my situation in its entirety. What we didn’t know (doctor included) was that the culprit had more than one dimension. Sickle cell Anemia is the name of the disease most people talk about, but my diagnosis is different. I was born with a rare form of sickle cell, referred to as beta thalassemia sickle cell anemia, to be exact. Yes, there is more than one form of the disease. Either one of these in its separate form can be life threatening by themselves. They both are hereditary blood disorders passed through parental genes, from the mother or father. I will get to the details shortly. There are a few distinctions that make each one different yet difficult to tell apart. Because the two have the same motive of operation regarding red blood cells, some doctors would mistake the character of sickle cell for that of beta thalassemia and so forth, treating as such, when in fact they were working together as a killer team.

WHAT IS SICKLE CELL ANEMIA

AND BETA THALASSEMIA?

Let’s be clear; sickle cell anemia is a blood disease that is passed from the parent(s) onto their offspring, making it hereditary and nothing contagious. Both parents must have the trait to form the full disease, or one with the full disease and the other has the trait. A parent with the trait can pass the trait but not the full disease. In my case, my mother has the sickle cell trait and dad had the thalassemia, which in turn made the awesome combination I have today. By me having the full disease, my children all have the trait of at least one of the two (sickle cell or thalassemia). But by their mother not having any blood disorders, they were blessed not to be cursed as I am. They may have my crazy ways, but that is a different story for another book, lol.

The disease causes the red blood cells to be misshapen from the bone marrow, like a crescent moon or a Russian sickle. The major purpose of red blood cells is to transport oxygen throughout the body. When the cells are odd shaped, they cannot perform their duty properly and, in conjunction with their shapes, cause traffic jams in the blood vessels, and it all adds up to a problem called a crisis. Any part of the body not receiving oxygen and other vital minerals will indeed experience pain on a level that is out of this world. Anyone who is familiar with the term crisis also knows the term is widely used in the medical field, and it is understood to be a very severe/urgent matter. Beta thalassemia is a blood disorder as stated, but unlike sickle cell, this form of anemia attacks the hemoglobin in each cell. There is a common factor: They both limit the amount of oxygen the body has in circulation via the blood cells. Together, they have proven to be quite the adversary.

EVERYONE ELSE IS DEAD

Every person I knew growing up who had any form of sickle cell is dead. I am the last of my friends from my era. Being told the phrase at a young age, You won’t live to see…, does something to a person; I don’t care how old you are. I can hear the doctors clearly, as if they had just spoken the words minutes ago. The voices of the doctors are still singing their hypocritical song in my mind over and over. In the different rooms, it was so quiet—even with the televisions on, there was a silence as if I was trapped in a moment in time and space that deadened the verbal assault on this already broken vessel. Subconsciously, in those instances, it was revealing to me that I did not have to pay attention to what they were saying. Or maybe to merely take heed of the message conveyed through God’s messenger. I don’t have any answers set in stone.

Lying in a countless number of beds, in more hospitals than I care to remember, it began to look like those doctors were right. Around the year before my death due date, the pain grew worse, to the point that a few doctors began to wonder if there was a problem going on at home—as if I would run from my living situation to be stuck in bed inside a hospital on purpose, with IVs hanging out of my arms, being pumped full of drugs, away from good food, clothing, and shelter, my own bed, and with a smaller TV. Not to mention my family loved me. No, the problem was from being born in 1978. Not minimizing the suffrage of the first patients fighting the disease, but there was very little knowledge being provided to the ones living with sickle cell and beta thalassemia that would better equip us for the very difficult road ahead. Those days feel like yesterday and two lifetimes past. Between now and then, there has been some information given about what to look forward to. But not even half could prepare the mind or the body for the events (one of many) some may live to endure.

Without proper medical treatment or people who really love and care for your well-being, and most of all a strong belief system, very few will survive. Living to see the ages I was told that I would never see, and that others in similar shoes could not, gives every day a surreal vibe. When there is an expiration date placed upon your existence at the age of 11, telling you that three years later you won’t be here on this Earth any longer, the fight inside a person’s soul either grows to feed the warrior or starts to wither, diminishing the fire of life and essentially speeding up the fading of the internal flame. It happens in an instant. No matter who, what, where, why, or when anyone tries to say otherwise, it does not take a long, drawn-out time frame. Decisions such as these are made during moments that are faster than the brain can interpret and the eye can see. The very important ones are made internally, inside a person’s spirit. If you’ve ever made a choice or had a feeling about someone or a situation before having all the factors in order to make an informed decision, but you just knew what to do, where to go, how to say the words, and whether (or not) it was time to push harder or throw in the towel, I’ve had quite a few of these moments. Speaking from personal experience, not one time did any part of my being choose flight over fight, to throw in my towel, or to allow this invisible monster to extinguish the burning flame within. I wholeheartedly chose to rage against the dying of the light.

STUDY YOUR OPPONENT

For everyone who has a cross to bear, a race to run, or an opponent to conquer, the best thing we can do is know and understand what it is we are dealing with. How do we make it through to see another day? What terrain will we be traveling? What are the ops’ strengths and weaknesses? In this case, here is how to start:

CHAPTER 2

A SOLITARY ROAD

"When the cards are dealt, it doesn’t

matter what you or I may have, it’s all

about how the game is played."

2

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,