Wow, 24 years! Who would have thought I’d be celebrating 24 years of living with HIV? Certainly not me. I thought I’d be dead long before this point in my life. Even in constantly confronting my own mortality, I made a conscious decision to keep living. Not saying I always live with purpose or a plan; sometimes I adjust my plans midway through the execution. Some days have been worse than others, but every day has been a gift that I cherish with everything in my heart.
In these 24 years, I’ve said “see you later” to women that I came to love as sisters. I still think about Edith and Loretta and Brittany and Emma and Angel and Qiana and Rose, and…too many to keep naming. I think about our time together and the wisdom that I gained from each of these sisters. Angel was the first woman I met on this journey who passed away. She bought my baby a pair of black patent leather shoes that I still have today. Rose used to tell me stories that made me laugh so hard I would have tears streaming down my face. I remember the one about her getting lost while leading a blind man. When Rose’s mom finally picked them both up, she immediately said “Lord, the blind leading the blind.” You had to be there, of course, but Rose knew how to tell a good story.
I’ve also met some of the most kick ass women in the world while on this journey (Linda and Yolanda and Cecilia and Tiffany and Meta and Vicki and Naina and Venita and so many more). Some of the best protesting I’ve ever been part of took place with these sisters. We hijacked the escalator at the CDC Prevention Conference, riding up and down chanting and holding signs. At the International AIDS Conference in 2012, which took place in DC, we led the march. We’ve made phone calls to stop our clueless legislatures from taking our healthcare. Some of us were willing to be arrested to ensure women living with HIV (WLHIV) didn’t lose their health care.
There have also been remarkable breakthroughs in HIV in these 24 years. ACTG 076 went into Phase III trials (this was the research that asked if a woman took AZT during pregnancy, delivery, and the baby took it for 6 weeks, would it prevent HIV? The answer was YES.). More HIV meds were introduced. The word “cocktail” took on a new meaning (multiple HIV meds). Treatment protocols were changed (hit it hard, hit it fast). One-a-day pills came on the scene. PrEP was added to the HIV prevention toolbox. And, finally, we learned that U=U (undetectable equals untransmittable). These are just a few of the advances in HIV.
So much has happened in my life these last 24 years. I went back to school, earning not one but two degrees in social work. My career has evolved over these years and today I am doing a job that I was born to do. I have two grandsons, both of whom I spoil rotten! My oldest grandson has a 4.0 and the youngest is a mathematical genius. Can you tell I’m a proud grandma?
24 years ago I was a scared young woman, planning my funeral because I thought I was going to die. I was full of internalized stigma, drowning in shame. Today I am a Woman PROUDLY living my truth. I am no longer drowning in shame. There is no more stigma in my life. I love and am loved. I am a mother, grandmother, sister, activist, organizer, public speaker, and friend. I am a woman LIVING 24 years with HIV!
