Telling My Story
Ben Banks is an EGPAF Ambassador. After contracting HIV as a child during treatment for a rare form of cancer, Ben became an advocate for children and young people living with HIV. In this blog, Ben writes about sharing his story with students at George Washington University.
Recently, Dr. RJ Simonds, Vice President of Program Innovation and Policy at the Elizabeth Glaser Pediatric AIDS Foundation, invited me to be a guest speaker for his graduate level pediatric HIV course at the George Washington University in Washington, D.C. My topic was “Growing Up with HIV.” I had an audience of no more than 10 students, but they were captivated by my story.
I was not nervous to share my experiences and struggles surviving both cancer and HIV for more than three decades. My life was flipped upside-down when I was diagnosed with cancer at age two; little did I know that same chaotic feeling would re-emerge 10 years later. Unknowingly, one of the blood transfusions that treated my cancer also infected me with HIV. This came as a complete shock to me, my family, and my health care providers. What was supposed to be a happy time in my life – celebrating 10 years of being cancer-free – turned into a nightmare.
My diagnosis came early in the 1990s, when being HIV-positive was tinged with stigma and discrimination. During my talk at George Washington, I shared my fight to attend public school. I was living in the suburbs of Washington, D.C., and my school-system had not yet created an AIDS policy. My family met with the superintendent, principal, and other school administrators, to decide if I would be allowed to attend school and determine the protocol for other HIV-positive students. After it was decided that I would not be a threat to my fellow students, I was reluctantly given permission to attend school. I felt like Ryan White in the late 1980s as I battled to attend school. But because my family and the few friends who knew my status kept my secret and treated me normally, I finished middle and high school without any episodes of stigma or discrimination.
The students at George Washington wanted to know if I was in a relationship or about past relationships, and I was happy to share my journey in the world of dating. Shortly after being diagnosed, the thought crossed my mind that because of my HIV status, I may never find someone to love me unconditionally or without reservation. I prepared myself for the worst, but what I got was the best—my very loving wife, Kasiah. Kasiah and I have been together for more than 14 years, and next month, we will celebrate our tenth wedding anniversary. Earlier this year, we were blessed with our first child, Finley Elizabeth Banks (named in honor of Elizabeth Glaser). Elizabeth Glaser paved the way for many medical miracles. I am alive today because of the work Elizabeth did so many years ago and the people she inspired to keep fighting.
Both Finley and Kasiah are healthy, and most importantly, they are both HIV-free!
HIV is a disease that does not discriminate, but those living with the disease face discrimination. We have the ability to love and treat all people with kindness. My baby daughter Finley is just one example of the hope we have for the future. I left the students with a message of love and hope, telling them that they are the ones that pave the path of the future – it is out there waiting for them.