Sick Cells interviewed Bre’Asia, a sickle cell warrior whose work as an educator and advocate is driven by her personal experience as a student. The challenges she encountered during her K-12 education and as a first generation college student fuel her passion for helping other warriors ensure they have a community to support their physical and mental health as well as their academic success.
My parents knew when I was born that I had sickle cell. I was originally diagnosed with sickle cell SS, but then was diagnosed with SC. That’s not normal, that’s not common. My mom was going to name me Megan, Constance Amber, all these names. But then she went to sleep and in her dream, the Lord told her to name me “Bre’Asia,” which literally means miracle.
My experience growing up was a tricky experience. At four years old, a doctor cut all of my hair off because my braids were too tight and the sickle cell crisis had blood rushing to my head. At eight years old, I was told I wasn’t going to survive. At 16, they told me I wouldn’t survive again. And at 17, I came into the hospital with meningitis and I spent my 18th birthday with a PICC line in my arm.
So I am here to say,” Hey, I have sickle cell, but it doesn’t have me. And it’s okay to not be okay. It’s okay to choose to live.” That’s one thing I tell myself every day. I have a picture frame in my bathroom and it says, “She believed she could, so she did.”
I’m an educator. I teach grades K through five for right now. I’m also a business owner and I help people who are first generation students like myself get scholarships, learn how to do FAFSA, learn how to just navigate college because they’re the first in their family to go to college like I was.
My goal in life is to bridge the gaps between student health and education—whether that’s for people with chronic physical illnesses like sickle cell or mental health experience that include autism, ADHD, and beyond. IEP plans are really hard and sometimes they don’t cater to a student’s specific needs. I want to create a community-funded school or business where people can get the help they need for a certain sickness without worrying about the penalties that come with it for education. I want to make sure that all students are able to be heard and be seen in classrooms.
I actually never wanted to go to college. But my mom told me, “You’re going to do something. You don’t have a choice.” And my doctor, my hematologist, Dr. Bryant, she said, “Bre’Asia, you’re too smart to fail. Even if I have to do a college application for you, you’re going to college.”
I absolutely hated college until I found my family there. As a student, having a community at my school to say, “Take care of yourself” or “Hey girl, it’s okay if you miss class. It’s okay” was a really big thing for me. That’s what got me to the point where I’m like, “Hey, college is not that bad. It’s pretty fun.” That’s what got me to the place where I was like, okay, people with disabilities need to have that understanding. They need to have that voice. I can be that voice and I will be that voice because there’s plenty of people with sickle cell that don’t get the help that I had and they don’t have the support that I do have and they don’t have the resources because they don’t know about the resources.
Telling people with sickle cell I know how they feel. And so to walk them through the steps of trying to get care and the utmost care that they can get,the help that they can get, and the resources that’s out there for sickle cell patients.
I also do more local public testimonies now. I’ll go to the courthouse and I will keep them abreast of what sickle cell is, ask for funding for sickle cell research, and give them laws about sickle cell. One of the most common disability laws there is, is IDEA: the Individuals with Disabilities Education Act. Decisionmakers need to be informed abreast about that policy when it comes to government and education systems for people with sickle cell and chronic illnesses.
One thing that I’ve learned is boundaries: setting boundaries and sticking to them. I’ve learned coming from a chaotic family, and being the youngest out of all boys is boundaries.
It has kept me going knowing that I have myself, I have my mom, I have God. I am a Christian. So every time I go through something, my first thing is to pray. I also like to write. If I am in pain, I will write before I tell anybody something’s wrong with me. I love to laugh.. So keeping myself busy with jokes and TVs and anything like that, that’s what keeps me pushing.
As funny as it sounds, I would tell them for starters, sickle cell is not contagious. I hear that all the time: “Can I get sickle cell from you?” No, you cannot get sickle cell from me. It’s not contagious. But I will tell them that it is better to educate yourself than to not know. But it is okay to not know for a moment, but to educate yourself because it is a real thing as deadly as cancer.
I will also sit them down and let them ask questions. I’m a very open book when it comes to sickle cell in my life and how I’ve navigated through the challenge of sickle cell. I’m a very open book. So answering their questions and being that light for them. I would also tell them that sometimes sickle cell doesn’t look the same for everybody. One person can be smiling and laughing when they’re in pain like myself and somebody else can be crying.
I would tell them that it’s okay to be you. Don’t try to be anybody else. Don’t lose who you are because of sickle cell. You have sickle cell but sickle cell doesn’t have you. Remember to listen to your body when it’s whispering for rest, water, and medicine before it starts yelling.
