I suffer from sickle-cell anemia. I say suffer because if anyone knows anyone that has this disease, or is in anyway familiar with it—then they know that suffering is what it is. For those of you who don’t know what sickle cell is, it is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid, sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body and cause extreme pain. They call these a painful event or a sickle-cell crisis.
I cannot describe the pain to you. The closest I can tell you is this—when I was having contractions with my daughter, I remember being hooked up to a monitor that would show me the contractions. My doctor came in the room and said, “Whoa, that’s a big one. You feel that?”
I didn’t. My back hurt, but I didn’t feel a contraction.
“Are you sure? You don’t feel any pain?”
I shook my head no.
She waited a few minutes until another contraction appeared—another big one, she said.
“What about now?”
The pain felt like an extremely mild sickle cell crisis—nothing like I thought it would be. Even after my c-section, I walked around normally.
“Is this what women complain about all the time? This isn’t painful.”
“Remember you have a higher tolerance for pain than most people. You are in a lot of pain, but you’re body has a found a way to cope with it because of your sickle-cell.”
Why am I talking about this now you ask? When I started my blog, I wondered how personal I would take it. To respect my family’s privacy, I won’t post pictures of my daughter (at least until she consents in me doing so) or talk much about the hubby. But having sickle-cell is one of the reasons I started writing in the first place, so yes I felt it was time to share my story.
Growing up with a chronic illness, your whole life is surrounded by getting sick.
“Don’t run like that, you could sick.”
“Bring a sweater with you so you don’t get sick.”
“Make sure you’re drinking enough water so you don’t get sick.”
You get the idea. I get sick. A lot. But more than the sickness, I felt the burden I was putting on my family at a very young age. I was nervous about making plans—What if I had to cancel because I got sick? With that burden, came an overwhelming sense of shame. It wasn’t technically my fault that we weren’t going to the mall, or the movies, or a friend’s party—but it was my fault. I saw the look that crossed my parents face when I was sick—the worry, the helplessness from not being able to take the pain away. I heard my mother’s tears in the night—causing my own tears. Why couldn’t my body be obedient and just for once be healthy? I didn’t want to be in pain but more than anything—I didn’t want to cause my family pain. I didn’t want to see the look of disappointment cross my siblings faces when Mama told them we couldn’t go somewhere because Trina was sick. Again.
So I began to hide it. I would hide the fact that I was sick, not telling a soul—pretending that I was fine, that I was normal.
But you can’t hide from your Mama. She said that she would be able to see it in my eyes. How?
“You smile, but it won’t reach your eyes. You’re in too much pain.”
Anger would flash in my belly, what did she know anyway? I’m not sick, I would chant—with added foot tap for emphasis. I was fine, I was fine, I was fine. Because if you chant something several times it makes it true. It was true for Dorothy, it would be true for me too. I couldn’t keep this up of course, my body rebelled and I became so sick I missed an entire grading period of school. Two months in bed with my mother nurturing me. Sickle cell wasn’t going anywhere, it wasn’t changing or getting better. But my attitude would have to.
I loved doing hair. I was great at it too, a natural talent people would say. When my mother suggested that I get my license in high school, I felt inflated. Finally, something I could do.
“But you have to find a back-up plan. You won’t be able to do it the rest of your life.”
Fine, fine I said. But at least I could do it now.
And I did. For over ten years, I stood behind a chair and did my best at making women look beautiful. My clients were understanding during my periods of hiatus when sickle cell took over, and I was thankful for their patience. Towards the end of my career, my body couldn’t take it anymore. I had a shampoo technician, I sat on a stool, I reduced my schedule—nothing would keep me healthy, every week I would be in a major sickle cell crisis. Then my husband said enough. I had to stop doing the thing I loved most, the thing that made me feel normal for the first time in my life. As hard as it was, I had to let it go.
But I have good parents. Great in fact. And they prepared me—years before when my sister dared me to write a book better than hers—they told me what a great idea writing would be.
“You can sit down Trina. You don’t have to leave the house when you write. It’s perfect.”
Nothing is perfect, but writing feels pretty doggone close. Styling hair defined me in a way it never should have. I was proud to say I was a hairstylist—before identifying myself as anything else that’s what I said first. It was a hard lesson learned when I had to give that identity up—the woman who saw split ends before a smile, who could spot a weave a mile away—who was I if not that woman? I was still Trina. And that’s why being a writer—as great as it is—is not what identifies me. I’m a wife, mother, lover of God, friend, sister—then, yes—I’m a writer.
I say all this to say that I’m over at Rainy Day Diva today talking about what else? Unbeweaveable. When the lovely Denise asked me why I transitioned from hairstyling to writing I decided to stop hiding. I have sickle cell anemia and that’s why I could no longer do hair. No shame, no regrets—it is what it is. And as unbeweaveable (pun intended) as it is, there are some perks to having sickle cell. If a malaria epidemic heads our way I can walk around fearless. That’s right folks, I have sickle cell but I won’t get malaria. Pretty good apples, right?