I don’t remember my first hospitalization. I was either too young to understand it or too high off the five milligrams of morphine. But for as long as I can remember, I’ve gone to the hospital for extreme pain about 10 times a year. Almost monthly. I could practically put my address down as the hospital rather than my medium-cute apartment in the Bronx.
Sickle cell anemia is a genetic blood disorder passed down from parent to child. About 70,000-100,000 Americans, mostly Black people, suffer from this disease. For a person to get sickle cell anemia, both parents have to have an abnormal gene called hemoglobin S. (The hemoglobin S gene evolved to protect against severe malaria, and doesn’t cause health problems. Unfortunately, however, when both parents have the trait, they have a one in four chance of having a child with sickle cell anemia.)
I was adopted when I was 7, after five years in foster care. My diagnosis means my birth parents both had hemoglobin S. I don’t actually remember them and they never showed up for visits. We’ve never discussed my sickness or anything else.
Normal red blood cells are round. If you have sickle cell, your red blood cells are an “S” shape, like a sickle. The S-shaped cells die faster than normal blood cells, causing a shortage of healthy blood cells. The S-shaped cells block blood flow, causing extreme pains throughout your body. I know that pain, also known as “sickle cell crisis,” firsthand. The first crisis I remember was when I was 7, not long after I was adopted.
I was watching “Dora the Explorer” when pain attacked my arm. I cried and pointed at my arm.
“What does it feel like?” my mom asked.
“Like a shark bit it off!” OK, maybe I was being dramatic, but I couldn’t understand why or how it could hurt so much.
That pain, sharp and stabbing, went on for four days. On the fourth night, I woke my mom in the middle of the night, sobbing and screaming, “Mommy, Mommy, Mommy.”
“OK, OK, We are going to the hospital now. Just try to relax, OK? Go sit on the couch while I get dressed.”
My mom carried me into the hospital like a fragile vase because I was in too much pain to walk. An ambulance rushed past. Inside the gloomy emergency room, screams and cries echoed. Patients looked like dried up fruit left out in the sun too long; some slouched in uncomfortable chairs. The lady at the front desk looked bored, like she was watching TV.
My mom talked fast to people in blue scrubs, tears flooding her eyes. The lady in blue guided my mom to the back room and stuck me with a needle. The feeling of being pricked didn’t bother me, but then a burning feeling rushed through my veins, like fire racing through my body. In 15 minutes, my vision blurred, my body went numb, and I finally slept. I found out later that I’d been injected with morphine.
A few nights later, still in the hospital, I was hooked up to an IV, like a PlayStation with cords coming out of me. Still getting morphine every couple of hours. Every morning I was woken up by needles sucking out my blood.
Laurie breathes heavily as she hears creaking footsteps from underneath the bed. The steps get louder and louder… Click! I turned off the television just as my mom came to check up on me. For a second I had forgotten I was lying in a hospital bed.
I was watching “Halloween” in the hospital, while lying in a dark room off a long hallway, hearing random screams from children being woken up to have their blood drawn. It may seem weird for a 7-year-old already in a scary situation, but horror movies are one of the few ways I can mentally escape the reality of being in terrible pain and in the hospital a lot.
That was my first crisis, but far from my last. The disease basically has a brain of its own. It sneaks up on you like you’re playing a game of tag, and the disease is “It.” You’re running to base, which is the hospital.
I couldn’t participate in other activities, even with the medication I take every day. I can’t swim in a pool or play in the snow, because if I get too cold I risk a pain crisis. I can’t play rough or do gymnastics, extreme dance or basketball. I can’t even sit in air conditioning on blast without warm clothing.
I spent my 13th birthday in the hospital. The night before, my mom and my grandmother decorated my hospital room on the ninth floor, which is for blood disorder and cancer patients. However, that same night my oxygen levels got worse, and I had to be moved to the 10th floor to be hooked up to the bipap machine. That’s a device that forces oxygen into your lungs through a mask. It feels like sticking your head out the car window.
I get hospitalized with pain crises 10 times a year, and in seven of those 10, I get blood transfusions that make me feel like a lab rat. Seeing a bag of blood dripping slowly into me was especially weird as a young girl. I don’t feel any pain during a transfusion, but afterwards, I feel as itchy as if I swam in a swamp full of mosquitos.
When I was 16, I had to beg for permission from a doctor to do track. And then I got sick again and had to quit track.
Silenced and Alone
Moving from house to house as a young kid made me feel silenced and alone. Being sick on top of that made me feel different and like a burden. An unnecessary object that nobody wanted or cared about.
Once I got adopted, I definitely felt more seen. But because I had always been shut down in previous households, I didn’t know how to express my emotions about my illness and my pain. Furthermore, nurses and doctors treated me differently. “Weren’t you just here a few weeks ago?” “We just gave you Tylenol three hours ago—are you sure your pain is still a nine?” I felt it was because of the color of my skin, and I’ve since read that medical personnel often dismiss Black people’s pain. Being disbelieved was even more isolating.
Yes, my mom and siblings always took care of me when I was sick. But I got no hugs or comforting during or after my hospitalizations. It sometimes feels like they are watching a movie, but on mute. They see me crawl on the floor to get to the bathroom and cry rivers for one five-milligram pill, but they don’t seem to react.
When I am sick, I don’t sleep, eat, or drink. I get only IV fluids and light foods that my stomach can hold down. After I am discharged from the hospital, I go through withdrawal from the pain medication. My life is constantly put on pause.
Mom is a single parent who works a lot and has four other children. My siblings are too young to understand what I go through. My family doesn’t ask me how I’m doing besides the physical. So I never felt like I could tell them how hopeless and alone I feel.
There’s not really a cure. Some sickle cell patients get bone marrow transplants. Older patients have told me that it’s hard to find matches for these transplants; plus, they don’t always work. Doctors say you have to be extremely sick to even be considered and have to be “healthy” to be “cured” which doesn’t make sense to me. If you’re healthy, why do you need a transplant? No doctor has answered that question.
I have read a lot of science. What they don’t tell you is the mental toll you will have to endure and the feeling of becoming less and less like yourself or like a person in general. They don’t tell you about the loneliness, feeling like a burden, not being understood, resenting yourself and the rest of the world. I hated my body: It felt like I was cursed to suffer.
Why me? Why don’t I get to go to Six Flags with its cold water? Why can’t I run track without injury?
I never wanted to feel different, and other people don’t like dealing with a girl with a disease. People say, “You seem to do OK.” I think, “You don’t know.” But it seems like too much to explain it all.
Self-Advocacy Gives Me a Bit of Control
When I was 7, I was prescribed hydroxyurea, and was told I had to take it every day for the rest of my life. Hydroxyurea makes me feel sick and sluggish, like an alien is going to burst out of my stomach and turn me into acid. I took it every day for eight years. I felt like I was in an arranged marriage where I had no say about what I put into my body.
At age 15, I finally advocated for myself and got onto a different medication called Adakveo. On the new meds, I felt human, less sick, almost normal.
It was hard advocating for myself, but it’s my body and I’m the only one who feels the pain I go through. Not the doctor, not the nurses, not my mom or my siblings. So I am my best advocate. Now I’m not saying patients shouldn’t take their medicine; I’m saying do what’s best for you and your body to make you feel comfortable. The new medication was my balance, and it worked for me.
Connecting With Another Girl Helps
One thing that helped me cope was meeting Janelle in the hospital when we were both 14. She also has sickle cell and also has siblings who can do anything, while the two of us can’t play in the snow or go in a pool. She understood everything I was going through, and I felt more understood than I did in a long time. (She also happens to have the same name as my sister.)
Janelle and I are still friends. She lives far away, but when we do see one another, we watch movies, eat snacks, and make bracelets. Sometimes we are hospitalized at the same time and end up in the same room.
I also find unexpected ways to feel like more than a sick girl. Recently my art teacher, Mrs. V, said, “J, could you step out of the class for a second?”
The bulletin boards were bright and colorful since it was art class, but I could sense tension. Mrs. V was just back from leave after having a baby boy. Her brown cocoa skin looked flushed and she seemed hesitant.
Sharing My Experience
“Hey, Mrs. V, what’s up?” A few seconds went by, but in my head it felt like hours. She finally took a breath and spit out the words like sour lemonade. “My baby boy was diagnosed with sickle cell and since you’re the only one I know who’s experienced this disease, could you give me some advice?”
I felt sad hearing this and also a lot of pressure to explain how much it changes your life. Through my nervousness, I let out the words “Just be there for him…. Some days neither of you will sleep. Sometimes he may feel like giving up. Some days he may feel like he might not be heard clearly. But never let him think it’s sickle cell versus normal kid—he can be just as normal as anyone else, maybe even greater.”
For the first time in a long time, I didn’t feel like just “the girl who’s always in the hospital.” Because what I said about her son was true of me; I have achieved a lot despite spending so much time in pain and on the sidelines of normal teen life. And now I was helping my teacher deal with her difficult life situation. I’m the girl who deals with sickle cell but still manages to make something good out of something bad.