Taylor Brooks walks in, still wearing her Woodlawn Secondary School uniform underneath a purple coat. She takes a seat at the end of the table and pulls out one of Wendelin Van Draanen’s “Sammy Keyes” books. She keeps quiet and reads, while at the other end of the table, a group of middle and high school students gathers with their mentors. They eat pasta and tell jokes. “Where does a king keep his armies?” The answer turns out to be “in his sleevies,” which elicits a round of laughter from the group.
Ranging from seventh to eleventh grade, the students at the table are here because they have sickle cell disease. The group is organized by STRIVE, a mentoring program led by University of Chicago undergraduates who provide academic and emotional support to the kids. STRIVE meets every Monday evening at La Rabida Children’s Hospital in South Shore, and mentors stay in touch with their mentees throughout the week.
“Time for highs and lows!” a mentor says, and Taylor peeks up from her book. Two torn scraps of notebook paper are passed out to each person in the room, along with crayons to write out the memorable high and low moments of the past week in shades of Wild Strawberry, Raw Sienna, or Aquamarine. Mentors and mentees go around the room, beginning with lows. When it is Taylor’s turn, she says quietly, “I don’t feel good.”
After everyone shared, all of the little scraps of paper are collected in a plastic bag and put in the trash. “Say you have a bad day,” explains Taylor. “You put your low in a bag and just throw it away. Throwing it away is just like throwing away the bad times, focusing on the positive.”
After lows, the group moves on to the highs. Elijah Powell, a junior at Kenwood Academy, recently tried the new Taco Bell Doritos Locos Tacos–his high point for the week. “I had to pull over in a bad neighborhood to eat it, because I was in love,” he says, lowering his voice and savoring the “o” in “love.”
Though dealing with sickle cell disease, the people around the table are all also in the midst of adolescence: finding friends, navigating school, and anticipating the freedom and responsibilities of adulthood. In their own way, they all seem to be searching for a place and a meaning.
Sickle cell disease is genetically transmitted. The trait is prevalent in populations that have settled in places where malaria is common, such as South America, India, and especially sub-Saharan Africa. As the disease is genetic, it has remained in those populations as they have dispersed across different continents. In the United States, about one in five hundred African Americans are born with sickle cell.
In 1904, Chicago physician James Herrick was the first to document the disease when he came across an anemic patient with unusually shaped red blood cells. This is where the name comes from: the body creates crescent-shaped red blood cells in addition to fully circular ones. The extent to which the red blood cells are malformed changes from case to case–sometimes the cells look like a person took a nibble out of them, other times they look like a shredded dog toy.
Issues arise when the jagged edges of the cells catch on each other and begin to clot, stopping muscles and tissue from receiving oxygen. Known as “crises,” clots result in acute pain and, depending on where the clot is, an array of serious damages to organs that can range from stroke to kidney failure. Individuals with sickle cell disease also have a weakened immune system, making them easily susceptible to infections. A crisis can pass quickly or require hospitalization; in some cases, surgery may even be necessary.
The gene is recessive, which means that in order for the disease to manifest itself, both parents have to pass the trait onto the child. Those with sickle cell typically know from birth, and begin to experience symptoms before they reach kindergarten.
A junior in high school, Elijah has a slight build, with a big smile and buttery eyes, a side effect of his condition. He speaks quickly and surely, backed by a faith in the Bulls and in God. When we begin talking, he tells me about the best movie he’s seen recently. “Alright, this is going to sound so wrong, but I liked ‘Dear John,’ ” he admits with a sheepish grin. “It’s this romantic movie. It’s like <i>so</i> romantic…I can’t even explain it to you. You know it’s romantic when a guy starts crying–I cried, yeah.” He tries hard to suppress giggles.
As for his own romantic life, Elijah isn’t dating anyone currently. “I considered it a couple of times,” he says, “but I explained to them where I’m coming from and they understand that.” He is optimistic though. “Maybe next year, knowing I’m a senior, I’ll settle down.”
In the meantime, he hangs out with his friends, watching movies and playing pickup basketball. “Every now and then I have to whup them, show them my Kobe status,” he explains.
“I could’ve gone out for the basketball team, but that’s a commitment,” he says. “If I know I’m going to be sick, and say we do go far or something, and I’m sick in the hospital, I feel like I put the team in a bad position. I wouldn’t be able to be there all the time, I wouldn’t be able to make practice all the time.”
Missed classes and assignments are a reality for all of the kids in the program. Elijah estimates that he’s missed 90 days of school over the past year–every two to four weeks is accompanied by one to two weeks bedridden in the hospital. As it is for all the kids, his bouts of sickness can come at any time and be set off by seemingly anything, such as a change in the weather. High stress can also lead to a serious crisis.
“I missed my whole third grade because I was sick, so I had to go to summer school,” says Taylor. Recently she’s been doing better though, and has to go to the hospital less and less. “Sometimes I might need a little help in school but I don’t want to be behind. I just want to be like everybody else.”
Jamal Stallings is finishing up his first year of high school, which he says is “different.” He periodically misses school, when he gets bad chest pains. “The first time that started to happen my friends asked me why I was out and I was like, ‘I was in the hospital,’ ” he says. “They asked why and I said sickle cell.”
The missed school and hospitalization is visibly disruptive, an obvious mystery to any classmate. It can be tricky to balance friendships and school obligations in the face of the uncertainty of sickle cell. The kids have to consciously make decisions about how much to tell others and how to tell them.
“Most of my friends know but I don’t open up to them about my troubles with sickle cell. I believe everyone has their own problems and I don’t want my friends to worry about my own problems,” Elijah says. “Everything is going to make sense. It’s been hard, it’s hard all the time. But you just have to make the best of everything. You can’t sit around and whine about it.”
Fajr (pronounced Fa-jah) McCurdy, who is in seventh grade, is more concerned that her friends would react in a different way. “Only two of my friends [know] because some of my friends are immature,” she says. “I think if I tell them they’re going to be like, ‘Oh she has a disease, we can probably catch it,’ or, ‘Everybody go home and tell your mother.’ ” However, she is grateful for the two friends she has told. “They are helpful because when I tell them I’m in pain they tell me to relax and take my mind off it.”
Fajr has two relatives with the disease: her aunt, and her ‘mother’s uncle’s wife’s sister’s daughter.’ As sickle cell is genetic, many of the kids know others in their families who also have the disease. These relatives can be a source of understanding and advice.
“I keep good contact with my aunty because she teaches me about how to keep healthy and stay fit so I don’t have a lot of surgeries,” Fajr says. “She told me to stay relaxed, don’t stress yourself out because stress causes pain. Make sure you drink a lot of water to calm yourself down and keep yourself cool.”
The kids also look to each other. “It’s fun to come to STRIVE,” says Christian Barber, a diminutive and soft-spoken 7th grader. He wears a jacket, tie, and sweater as part of his school uniform. “I feel like I’m not the only one.”
“I want to be a NASCAR driver,” Jamal says clearly, the light glinting off his black-framed glasses as he slouches back in his chair. He hasn’t learned to drive yet, but he’s enrolled in an after school driver’s ed program for next year. He also occasionally helps out his mom and sister when they have mechanical problems with their cars. If he can’t make it as a driver, he plans to be a crew chief.
“I’m going to do lots of activities. My major is in medicine, and my minor is going to be in art,” says Fajr when I ask her about college. “I want to be a sickle cell doctor to work with sickle cell patients.”
Elijah has similar aspirations. “I want to be a hematologist,” he says. “I feel like there’s a purpose for me having sickle cell and my purpose is to help people that have sickle cell when I get older to cope with this. I’ve been through it and I can understand where they’re coming from.” He might come back to Chicago after getting his MD, though he also has his sights set on Atlanta, or maybe Ghana, which Elijah says has the best sickle cell facility in the world.
Part of the impulse to help other people has to do with understanding and building off their own experiences. “The more I learn about it, the more I feel good about it,” says Jaqar Odom, an 8th grader who is looking forward to high school football. “The more I learn about it, the more I want to know.”
Belying that quote is an underlying belief in his identity. “It’s a big part of who I am,” Jaqar says. “It’s a part of me. I don’t see another way of being a person.”
Taylor puts it a different way: “I think sickle cell has something to do with personality.” In a way sickle cell defines the kids. The pain, the hospitalization, the vulnerability are all inevitable parts of their lives. Yet they are not defined by frustration or resignation in the face of this fate, but rather by courage and maturity.
Additional reporting by Bea Malsky.