The Sickled Cell

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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?”

“Nope. Nothing.”

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?

Click here to read the interview and go order your copy of Unbeweaveble now!

10 comments to The Sickled Cell

  • Reon

    Great post, Katrina. It’s obvious you have a great attitude and lots of strength.

    • Reon,
      Funny you should say that. I remember being in the hospital and they put me in a room (temporarily) with another woman who had sickle clell. You would have sworn we were giving birth in there the way we were carrying on. At one point she got so loud from the pain, I thought, “Now this is ridiculous. Is this how I sound?” She kept getting louder so finally I said, “Girl, you want me to call the doctor or something?” Now I try to suffer in silence although I don’t always succeed! (I thought this was a story that you could appreciate!)

  • Tracy Mouton

    Oh Gosh! You have broken me down and I am in tears! These are happy tears this time. I’m happy that you’ve found happiness after Behave. I was devasted when my hair lost you, but I’m rejoicing because you’ve proven to be a funny and fierce writer and an amazing friend. You have always been more than a hairstylist to me. God has bestowed great talents and gifts in you. And I’m happy that you get to share parts of you through your writing with the rest of the world. Keep up the awesome work. Love You Always!

    • You stop all that crying right now Tracy! I love you and this was always going to happen, I can’t do hair forever. But I sure do miss our girl talk, we seriously need to get together soon…

  • Hi Katrina,

    Thanks so much for being transparent. I knew there was something special in your writing! You understand pain and that it transmits into your writing. During my time in the school system, I worked with young people with sickle cell. As an Outreach Worker I once had to search for a parent of a student who was having a sickle cell crisis and needed a home to go to or for someone to pick her up. She lay on her side on a small school cot, in so much pain she was only able to nod when we spoke to her. We could contact no one by telephone so I drove through the North End to her Granny’s house who said she could come to her house if her Mother would bring her. Granny sent her younger brother to ride with me and show me where the student’s mother was. Younger Brother looked like all he’d done for the last five years is sit in the same polyester pants he was wearing in front of the TV. He was the uncle who lived in the back room, you know? He was little challenged mentally and when he talked his breath was so foul from his rotting teethe that it seemed to fill the car. I turned my head to keep from wincing. I didn’t want to roll the window down and chance hurting his feeling so I held my breath. We rode a few blocks and as soon as he said, “Turn here,” I knew what the deal was. It was the crack house. As I pulled into the drive the student’s mother came out of the house. I told her about her daughter laying on the cot in pain at the school. She looked at me bleary eyed and asked, “Did you go to her Aunt’s house?” I swallowed my anger. “Yes,” I said. “She needs someone NOW!” Mama agreed to go pick up her daughter and I got in my car and took the brother home.

    I don’t know no why I just wanted to tell you that story. Maybe because you put into words what that student couldn’t say and you make me so glad that something pushed me to be persistant that day.

    Keep writing Katrina, girl. I can tell you have great stories to tell.

    :-) Cheri

    • Cheri,

      Thank you so much for sharing this story. It means a lot that you took the time to make a difference in that young girl’s life. I’m sure she will never forget your act of kindness.

      I soooo did not want to talk about my sickle-cell. Ever. I didn’t want the pity party, you know? But I’m finding that it’s okay for someone to feel empathy about your situation, to take your pain into their heart is a good thing. I don’t plan on talking about it all the time, but it’s good to let people know what you’re going through. Some people were taking the full-time writer thing too literal. Chile, this is a forced situation, but I’m blessed to be able to have my husband provide for his family.

      I think that’s why I use humor so much in my writing. When you are dealing with something that might take your life you have to find something to laugh about. Tears of a clown right?

  • Thanks for sharing. I have a chronic condition too, eczema, & I’m in the midst of coming out of a crisis. I underwent UVB light treatment a couple of years ago & my light brown skin got burnt so I’m dark brown now; discolored in some places. It was so bad, I could’t sleep & gettihg out of bed was painful. There were times when I couldn’t do the things I enjoyed: read & write, but thanks to God, my skin is changing back to its original color & I’m healing. It’s great that you had understanding parents. Mine tell me if I just believe that I’ll get better (and stop scratching & picking), I’ll get better. Easier said than done. I pray that you get healed with time. God bless (Can’t wait to read your book.)

    • Xenia, my sister and nephew have eczema really bad, so I know something of what you’re talking about, although I don’t claim to know exactly what you’re dealing with. I know that stress causes flare-ups for them, and for me as well. But then again, stress is something we all to have to contend with right?

      Keep enduring and I hope you get a chance to pick up Unbeweaveable. You won’t regret it!

  • Charlene Johnson-Kegler

    Thank you for sharing.When no one knows,they can’t feel.Your feelings are normal for someone who has walked through the fire.It’s O.K.to say “ouch.my feet hurt”.People need to be informed that those suffering from sickle cell are normal people who can “do” things,like write a book.There are those of us who care and those who are oblivious.Share and when their time comes they won’t feel that they are alone. My bible student Theresa died of lupus at the age of 19.Five years later when I was diagnosed with lupus I asked God was I as kind to her as I should have been.Some days the pain is so bad that I feel it would be O.K. if I just went to sleep.Shout it out,not for pity but to educate people.Smile because we are making it through another day.

    • Charlene,
      I hear you. Sometimes I feel that if I do cry outloud it scares my family so I keep quiet, but when the pain is bad enough I can’t show that restraint. I glad I got a chance to share a piece of my story, you always wonder with these blogs how personal to take them, you know? But know I feel that if people get to see a glimpse of what I’m going through then they can endure problems too.

      I hate to hear that about your bible student. It’s funny how you have to go through something like that to gain insight into someone else’s world. But her experience made you a better, more compassionate person and when someone tells you that they’re sick you can feel they’re pain and you understand. And that’s what all of us really need in these times–people we can call true friends. Love you!

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