In 2003, I had a terrible cough deep down in my chest. I thought it was bronchitis, so I stopped smoking. I was tested for pneumonia but was told the chest X-ray was negative. I was given antibiotics and sent home. On my 40th birthday, I got up, and my family sang “Happy Birthday” and gave me a cake, and then I went back to bed. A few days later, I was in the hospital, diagnosed with pneumocystis pneumonia (PCP). I was asked if I wanted to take an HIV test. Later, a doctor’s assistant came in to check my vitals and stopped at the door and turned around to say, “By the way, your test came back positive” and then left me all alone! I was devastated!
That was on July 21, 2003. But five years of recovery allowed me to be strong and remain optimistic. I was told that people with HIV were living long healthy lives, and I believed it. Initially, I thought I would never work again and often be sick.
In April 2004, I became a peer advocate at WORLD (Women Organized to Respond to Life-threatening Diseases) and began to help other newly diagnosed women. I vowed to be an advocate for the rest of my life. So much has happened since then.
My first granddaughter was on her way a few short months after my diagnosis. I needed to be around to see her and guide her. I have two daughters and three granddaughters. I have been to three international AIDS conferences and a few national conferences and have touched the lives of many men and women living with HIV/AIDS.
When I was diagnosed, I had AIDS—I had only 50 CD4 cells. I had no idea my life would be changed forever. I told my family right away because I already knew about shame and stigma from being a recovering addict in the past. But I had no idea that in only a few short years, I would tell my story to local news media and others around the country. I decided to do this because I wanted other African-American women to know that it’s a lie that this is only a gay, white disease. I also knew it was important to tell my story to those who make assumptions about how people get HIV or what they should look like! I am in the process of writing my memoir and sharing my experience, strength and hope to others.
What three adjectives best describe you?
Outgoing, loving, fierce.
What is your greatest achievement?
Being nominated and selected as one of five HIV heroes by Bristol Myers Squibb and having a documentary of my life filmed and screened at a large theater in New York.
What is your greatest regret?
Not going back for my HIV test while I was in a drug treatment program in 1996.
What keeps you up at night?
I really have many sleepless nights. If I do, it’s usually related to my children or grandchildren.
If you could change one thing about living with HIV, what would it be?
I would take away the stigma and bottle it!
What is the best advice you ever received?
If you’re going to pray, don’t worry. If you’re going to worry, don’t pray!
What person in the HIV/AIDS community do you most admire?
Rebecca Denison, the founder of Women Organized to Respond to Life-threatening Diseases (WORLD).
What drives you to do what you do?
Until there’s a cure, the fight still goes on!
What is your motto?
I borrowed this from my friend: “I have HIV; HIV doesn’t have me!”
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dog, Lexie.
If you could be any animal, what would you be? And why?
A fish—I love to swim!