PTLD Stories of Strength

Ola zips her wheelchair with ease across the urban landscape of Washington, DC, pointing out buildings and businesses like a tour guide of the city in which she has lived her entire adult life. Circumventing a pothole in the sidewalk, she crosses a side street and confidently waves a car through before entering into the alley to gaze up at her favorite murals. Many of these murals boast images of Ola’s heroes––Black, influential figures that helped shape the course of American history toward greater freedom and rights for people of color.

Ola’s passion for and career in social activism stems directly from her experience as a person who has lived with illness and disability her entire life. She has experienced first-hand society’s discrimination not only toward disabled people but, in her case, a disabled woman of color. “People with disabilities are the largest minority in this country,” she says. “It’s terrible how we get treated. People talk to me in a baby voice. Because I’m in a wheelchair, they think I am stupid. These experiences have shaped my career. I am working to end discrimination on all levels.” Professionally and as a volunteer, Ola advocates endlessly for everyone’s right to live with freedom, integrity, and access.

Ola’s story of strength begins in toddlerhood. When she was just learning to walk and run, she was plagued with constant fatigue. She would often gasp for breath and complain of pain. Her mom, Nse, describes how common outings, like a trip to the zoo, were challenging. “We had to put Ola in a stroller, even though she was two years old, because she was so tired.” The family believed her lack of energy was due to her asthma, which had been diagnosed by her pediatrician. Ola says, “In elementary school, other kids would say, ‘Why are you so slow?’ Kids would be mad because I didn’t have to do PE. They thought I was getting special privileges, that I was lazy, or that I was pretending.”

A few months later, a call came. A heart was available for Ola. “I went to my brothers’ school to say goodbye, and we went via medical jet. We flew from Reagan to Pittsburgh. I was lying down on a medical bed the entire time. It was difficult to breathe, but I kept that to myself because I saw how the illness affected my family and my loved ones and I didn’t want to make them upset.” The EMTs transferred Ola from the jet to an ambulance flashing red lights across the tarmac. “Will I get out in time to see the B2K band on my birthday?” she joked. She was putting on a brave face for the benefit of her parents, but right before she went under, she cried to her mom, ‘I love you. I love you.’ “I believed I was gonna die,” she says.

Four days later, Ola woke up in the ICU, nurses surrounding her. “I remember waking up with tubes in my mouth and I was in so much pain.” Much to her parents’ relief, both transplants, performed five hours apart, had been successful.

The kidney was a surprise to Ola. When Ola told the nurses that her stomach hurt, they told her that it hurt because she had a new kidney. “I didn’t even know I had gotten a kidney transplant!” she says, her eyes wide with the memory. At the last minute, before she went under, they had been accepted for a kidney from the same donor because the doctors didn’t think Ola’s kidneys would be able to handle the lifelong medical treatment to sustain a heart transplant.

Ola’s recovery was difficult. The kidney transplant caused damage to nerves in her right leg, which made walking incredibly challenging. She limped along, grasping a walker in order to make her way down the hallways of the hospital. On top of the pain of recovery, she saw cultural barriers and discrimination at work in the hospital. Her parents were talked down to because they were immigrants of color. “The biases in the hospital made it difficult to access painkillers. They kept giving me Tylenol instead of something stronger.”

One day, Ola’s teacher invited her to join student government, which at her school was an academic class for students interested in making a difference. Ola’s voice and eyes brighten up when talking about her teacher. “She was instrumental in everything. She got me my first scholarship and taught me what advocacy means.” Her teacher helped Ola go to the school board, get up in front of a group of adults and tell her story. “I got a key to the elevator and my political career was born.” Following that success, Ola was invited to join the disability board for the county, which represented 150,000 students to help make public schools more accessible.

Ola’s freshman year at Howard University was her first time living on her own. Her work advocating for students with disabilities on the board had been so successful that she now saw social justice as her life calling. She majored in Administration of Justice and in her extracurricular time, she volunteered with several advocacy organizations and nonprofits. She also wrote and performed in poetry slams, using her words to express herself as an empowered, disabled woman of color. Still, her body gave her no break from medical challenges. “I was losing my voice a lot, like down to a whisper. And I had a mass in my groin that I had been ignoring for two years. I didn’t want to tell the doctors about it because I didn’t want to be back in the hospital.” However, Ola overcame her fear and made the decision to get checked out. The doctor performed blood work which revealed that she had developed PTLD (post-transplant lymphoproliferative disorder). “I didn’t know I could get cancer from a transplant,” Ola says, exasperated. After all she had endured, she now faced a potentially fatal disease. Nse says she knew that cancer could be a risk after a transplant but hadn’t spoken about it much. She was deeply saddened her daughter would once again have to face a dangerous medical issue. Hadn’t Ola had enough? Nse and Samuel prayed together for Ola’s health and relief from pain. It seemed, at that point, all they could do.

The doctors told Ola they were going to take a “wait-and-see” approach with her cancer, which matched Ola’s desire for less medical intervention. During her senior year of college, the doctors decided to treat the PTLD. They also removed a lymph node near her groin. “My reaction [to learning I needed medical intervention] was that I felt like I couldn’t afford more medical care. I was afraid about medical debt.” The treatment was successful, but she was told her PTLD needed to be monitored yearly.

These days, Ola counts her blessings. Her heart and kidney are functioning well, and she is cancer-free. She believes her disability has altered the course of her life for the better because it led her to her career in social justice. She runs a thriving nonprofit, Project ASCEND, which she single-handedly created in college. “I am the founder and director,” she explains, “We provide college scholarships and grants to disabled youth. In western Nigeria, we funded a library within an orphanage for disabled kids.” She also works full-time for the federal government as a contract specialist, volunteers for countless organizations, and is a highly sought-after public speaker who has shared stages with Senator Cory Booker, House Majority Leader Nancy Pelosi, and former Secretary of State Colin Powell. Her speaking topics range from supporting disability rights to reducing dropout rates in public schools. “My relationship with the word ‘disability’ has improved. At speaking engagements I say, ‘I’m proud to have a disability.’ I used to ask God, ‘Why am I in so much pain?’ I have learned as an adult that I wouldn’t live as purposefully as I do now. I am who I am because of my disability. People read my story and say, ‘You are a role model to me.’ Hearing that from others is what drives me forward.”