Arinayo Apara
Arinayo Apara - Chief Operating Officer
Being born with Sickle Cell, would normally be looked at as a disadvantage, but I always viewed it as a blessing in disguise. My journey has included a lot of physical pain, hospital stays, ICU visits, rapid weight loss, physical therapy and restricted activities.
I had always associated these trials in my life with lifting weights; The more trials you endure, the stronger you become. It is the people who lift the most weight, who have the ability to learn life’s greatest lessons. With the help of God, my family, and the brilliant medical staff who took care of me, I learned that anything is possible, as long as you keep a positive mindset. My parents always told me “Adversity is a fact of life. It can’t be controlled. What we can control is how we react to it.”
By incorporating a little positive into our lives, our boundaries are limitless.
Imperfectly Perfect helps younger, present and future generations aquire strength to find the positive in any situation. With this positive spin on life, it made all my blood exchanges, hospital visits, and everyday challenges much easier to get through.
Positivity is contagious, so let’s infect everyone and teach each other how to Incorporate a little Positive into life.
To read my full story, please click on the "Continue Reading" button below!
Some might see me being born with sickle cell anemia as a disadvantage, but I’ve always viewed it, as a blessing in disguise. Sickle cell is a blood disorder where the red blood cells of the body distorts itself from the normal circular shape and forms a crescent moon shape, similar to a banana. The oddly shaped cells sticks to the walls of blood vessels causing extreme amount of pain and potentially blocking blood flow to the particular area. Theses events when too many of the crescent shaped cells is called a crisis, which can range from mild to severe. Although my childhood may have been slightly different from others, I never allowed having sickle cell to be a hindrance in any of my choices. I’ve always said that the unfortunate situations that surfaced from having sickle cell were just a red stop in my journey to reaching my goals. Some stops were longer than others but after each stop is completed I continued on from where I left off.
Out of many experiences, one experience I can recall was when I was 13. It was a sunny Saturday and I went out to play basketball with my friends. From past crisis’s I’ve experienced I knew my limit when it was time to stop playing to prevent my body from entering another crisis. But when I got home that day I was in extreme amount of pain. Normally for a mild crisis my mom always knew what to do and by the morning I would be fine, but this night was different. I was in so much pain and began having trouble breathing. I was taken to the hospital for treatment. A normal hospital visit for me normally lasted about 3 days in which I will receive pain medication a large amount of IV fluids. But nothing seemed to work. They decided to do a chest x-ray and there it was found that my crisis had developed so rapidly it collapsed my left lung and I developed acute chest pneumonia. I was immediately transferred to the pediatric ICU where I’d undergo treatment for 3 additional weeks.
I remember being on so much medication that it began affecting my thought process. But I also remember having my mother by my side constantly just assuring me that everything will be ok. In the course of those 3 weeks I received over 3 units of blood as well as constant oxygen and numerous pain medication and blood thinners. With the prayer of my loved ones and the help my physician (Dr. Sundram) and her medical staff I was finally able to go home. At this point I was on bed rest for well over 2 months. The results of that experience left me weighing less than 80 pounds at the age of 13 as well as disfigured shoulders. The muscles in my leg became so weak I was on crutches for weeks and eventually had to undergo physical therapy when I was physically able. This is just one of many experiences I had to face living with sickle cell, but these experiences is what made be the strong person I am today.
Imperfectly perfect gives younger, present, and future generations a positive outlook on conditions that may be life altering. It teaches us how to adjust and reveals to the world the new way of being “perfect.” My parents always told me “Adversity is a fact of life. It can’t be controlled. What we can control is how we react to it.” While other kids played sports I played music because that’s what my situation allowed me to do. I’ve always associated trials in life with lifting weights. The more trials you endure the stronger you become, each trial you overcome is an extra pound added to your weight bearing capacity. Having a disease or disorder makes you a stronger and better person, as well as more appreciative of life itself.
There is a common saying that states you never know what you have until it have gone. This is why members of imperfectly perfect are the true definition of Perfect because our values on life are so much more than the average person it take a person of special circumstances to really understand our view. With this positive spin on life it makes all the blood exchanges, blood transfusion and crises easier to bear. I’m a firm believer that with “with God all things are possible” and I think I’m a living example of that.
I speak for all those with sickle cell anemia by saying we are Imperfectly Perfect.