When I started writing this story, I wanted to begin with a soft lead into the story with a feel-good vibe throughout the story. Needless to say, I just sat in front of my computer at a loss for words. I could not think of an upbeat way to describe the life of pain endured by someone living with sickle cell disease. So, as I re-read the notes from my conversation with LeMarcus Williams, I was able to feel the strength and maturity of a young, undefeated, educated and talented man living with sickle cell disease.
Williams has lived his entire life with sickle cell disease, and says he has the most severe type of sickle, “At some point of each day, I am going to experience some pain,” he said.
On the day he and I talked, he described his sickle cell pain on a scale of 1-10, as about 4-5. Williams says his parents were told that he had sickle cell disease when he was born, but he didn’t grasp the concept of what it was until he was about five years old.
At the age of nine, Williams was doing his part in bringing awareness to sickle cell disease when he was the 1998-99 North Carolina State Sickle Cell Poster Child. He recalls how in later years he helped his teachers explain sickle cell to his classmates and how he thinks educating people about living with the disease will help others understand. He describes sickle cell as an invisible disease.
“It is hard to explain to people and hard for people to understand my experience,” he said. “Each day I wake up in pain and go to sleep in pain.”
And with insurmountable strength to battle sickle cell every day, Williams maintains a positive, winning attitude. He graduated from Warren County High School in 2007 and from the University of North Carolina at Greensboro in 2013 with a major in Mass Communications and Media Studies.
Williams recalls his college years as being harder on his body. Before going to college, his family was very involved with his healthcare. But as a college student living on campus, he didn’t always make the best choices where his health was involved. “Just walking back and forth to class each day took a toll on my body,” he said.
Williams says that he can feel when his body is going into a sickle cell crisis and describes some visits to emergency rooms as “being at their mercy.” Williams says that it is his experience that many people in the medical field don’t know how to treat people with sickle cell disease.
“They think black people can endure more pain, and don’t try to treat it correctly and feel like we are drug seekers,” he said. “A lot of people with sickle cell experience the same thing.”
The type of sickle cell Williams has requires him to spend an unimaginable amount of time in the emergency room and being hospitalized. Asked how he gets through each day, Williams says he loves to write poetry, describes himself as artistic and has an extreme passion for music.
He is extremely proud of his vinyl record collection, which dates back to about 2010. Williams says he has used music as pain relief therapy since he was about 11 years old when he began to stay in the hospital by himself. Since there were not many kid-friendly day time television shows coming on during those hospital stays, Williams says, “My
Walkman and CDs got me through the days.” His favorite albums in his collection are the Isley Brothers.
When asked what he wanted people to know about him a person living with sickle cell disease, he said, “I have sickle cell, but I don’t let sickle cell control what I do. You can have a disability and still enjoy life. More efforts are being made to find a cure and better ways to treat sickle cell pain.”
To find out more about sickle cell disease, visit www.ncsicklecellprogram.org
T. A. Jones is a freelance contributor to The Warren Record, and the author of The Parent Push, Helping Your Child Succeed Through High School and Beyond, to get in contact with her visit tajones.org.