‘I have sickle cell, but sickle cell doesn’t have me’
Chicago’s Powell, who worked to raise awareness, dies due to complications
Elijah Powell was determined to live his life fully, to achieve his goals in spite of his sickle cell diagnosis. He was known for declaring: “I have sickle cell, but sickle cell doesn’t have me.”
On Jan. 14, early in the morning, Powell died due to complications from his sickle cell disease. He turned 25 two days before his death.
The ongoing snow didn’t stop family, friends, fraternity brothers and sickle cell disease advocates from filling the pews at his service to honor his life Jan. 25 at West Point Missionary Baptist Church on Chicago’s South Side.
Sickle cell disease, given its name for the abnormal C-shape the red blood cells take, occurs when there’s a genetic mutation in a person’s hemoglobin, the protein source in red blood cells responsible for carrying oxygen throughout the blood, according to the American Society of Hematology.
Excruciating pain is a hallmark problem of the illness.
Powell, who was a Hyde Park native, was diagnosed with sickle cell disease at 2 months old. At the end of 2019, he spoke with the Tribune about what it meant being a young black man living with the illness. He described the pain crisis as “beating you with a bat, or setting you on fire, and you can’t do anything,” and said it was hard having sickle cell because of how the condition depleted his body.
“The illness itself drains you and naturally makes you weaker,” said Powell, who mentioned he wasn’t as masculine as he’d like to be, a common sentiment among men with the illness. “Most black men, they’re strong and able to do a lot of stuff, but we can’t do as much because our body is weak and our organs are breaking down and being attacked by sickle cell disease on a daily basis.”
Powell worked to bring more attention to sickle cell because awareness of the illness, and the people it affects, was “not out there enough,” he said. “It still needs a lot more funding.”
TaLana Hughes, executive director of Sickle Cell Disease Association of Illinois, said they’re “advocating all the time,” particularly fundraising and securing grants, since her organization does not receive any state funding, she said. She feels that the stigma of sickle cell being “a black disease” is part of the reason it doesn’t get as many resources.
“Over the years, instead of (sickle cell) having the description of being a genetic disorder, because that’s what it is — meaning, genetically anybody can pass it down — it’s been called a ‘black disease,’ ” she said. “It’s like, ‘Oh, that’s a black problem so the black people need to figure out how to fix that,’ kind of thing.”
Despite the social justice, race disparities and stigmas associated with sickle cell disease, on top of the pain, Powell persevered and accomplished the goals he set for himself.
He graduated from Kenwood High School Academy, then went on to Morehouse College in Atlanta. He earned a biology degree from the men’s college in 2017. In March 2019, Powell achieved his dream of becoming a member of Alpha Phi Alpha Fraternity, Incorporated, a historically black fraternity with notable members such as Dr. Martin Luther King Jr.
Karen Calloway, Kenwood’s principal who has been an administrator at the school for 19 years, hired Powell right out of college to be a freshman on-track coordinator. She knew him from his time as a student there, and “he was just as spirited as he was before he passed,” she said.
“Elijah was really driven, kind and determined,” said Calloway. “As a high school student, he shot for the stars. He said he was going (away) to college, which was a concern because all his medical doctors were here. I thought it was a great opportunity for him, and I kept up with him over the years.”
In his role at Kenwood, Powell worked with and supported students in science. Calloway thought this would be a good fit since Powell was interested in medical research and learning about his own illness.
“Elijah worked with mainly black males, and mentoring them around science,” she said, “and they are passing today just because of his effort.”
Before Powell became ill and was hospitalized before his death, Calloway and other staff members celebrated his good work. The science teachers told Calloway what a difference they saw in the students because of Powell’s commitment, said Calloway.
“He wanted to be purposeful, that was very important to him: being impactful and helping other students achieve what he achieved,” said Calloway. “He was often in pain physically, but it just never stopped him.”
Underclassmen at Kenwood are working to keep Powell’s spirit alive by making a mural of him, as well as establishing a scholarship in his name, among other things. They also plan to participate in the sickle cell walkathon, said Calloway.
“He’s severely missed,” she said. “He gives our kids inspiration. His spirit lives on with us at Kenwood.”