Born Aug.1991 | New Haven, CT
Living with Sickle cell anemia
"Having sickle cell anemia has taught me not to be afraid. It has taught me that on the other side of fear is joy. There’s nothing but complete bliss after you get over your fear." - Iesha
Iesha says, describing the pain associated with having sickle cell anemia (SCD). “And then he grabs you again and squeezes harder. You can’t move, you don’t want to even breathe because these actions will make everything worse. You’re at the whim of this giant, as he squeezes you and squeezes you.”
This level of pain, called a sickle cell crises, sends Iesha straight to an extended stay at the hospital, where her doctors work to bring her pain back to a manageable level.
Still, despite these regular bouts with tremendous pain, Iesha says that she thinks of herself as a “blessed individual when it comes to having sickle cell anemia.” “I’m only in the hospital once or twice a year,” she explains. “Other people are hospitalized much more often.” Having lived with this disease her whole life, Iesha is level headed and practical about how she deals with the debilitation brought on by a crisis. “I know what I need to be comfortable,” she says. “I always have to have my blanket, my laptop, my heat pack, and my books from school.
I’m immediately in communication with my professors to let them know I’m in the hospital. Some of them don’t like for me to do work then, but I try to get done what I can.” Now in her senior year at Southern Connecticut State University, studying political science, Iesha says that her experience of balancing her condition together with being a student has been mostly a positive one—unlike her childhood, when things were much more challenging. “Elementary school and high school were really hard,” she says, looking down at her hands which are folded neatly in her lap. As a child, Iesha stood out as being different from the other kids.
“I couldn’t participate in gym because I was short of breath. No one wanted me on their team,” she recalls. “It was not a nice feeling. The kids didn’t understand why I was always missing school. But I kept my condition a secret, because I didn’t want them to judge me.” Iesha has an older brother who also has SCD, but they both kept the disease very private, and only shared the weight of it with immediate family, most particularly their mother.
“My mom was always with me,” Iesha says. “It was often just me and her in the hospital.” Her eyes fill with tears, remembering. “Times when I almost died, and my mom was right there, but no one else. That means something to me.”
Then when Iesha was 15 one of her nurses started an SCD support group for teens. Meeting others with her condition was a huge turning point for Iesha. “For the first time, I met other people like me. They shared how their friends knew about their condition, their school knew. And I was like ‘WHAT? Everyone KNOWS?’ I was shocked. I didn’t realize that this disease was something that people might....” She pauses, looking for words, making a motion with her hand towards her heart. “A disease that people might come towards. I thought it was just something that people pushed away.”
Now Iesha is not shy about telling people about SCD—in fact she’s the opposite. “I’ll put it on Facebook that I’m in the hospital again, I had a crisis. I’m happy to explain to anyone all about it,” she says. “I want it to be as known as cancer. I want people to understand how serious it is. That people die from it. It deserves a lot more publicity than it gets."
“If I could have whispered something to that little, scared Iesha back then,” she continues, “it would be: ‘Accept yourself. Accept that you have sickle cell and don’t be ashamed of it’.” Iesha is still in connection with the friends she made from that SCD peer group and friends she’s met in the hospital during extended stays. She also attends SCD walks and fundraising galas. Her boyfriend of two years, Rashaad, is extremely supportive of her and her condition. “Iesha is the person I want to be with,” he shares. “Whether she had 17 toes I wouldn’t care, I know she is the person I want. Some people might run away from this, but I will stick by her side. I know she is strong enough, and capable enough to handle this disease, and I believe in her.”
Now, Iesha dreams of law school after college, and perhaps one day becoming a judge. “I’m not sure it will happen,” she admits. “There’s the huge financial strain of education, and sometimes I doubt myself—if I could handle all it would entail. But this disease has taught me not to be afraid. It has taught me that on the other side of fear is joy. There’s nothing but complete bliss after you get over your fear.”