May 2, 2011
Program director, AIDS Alliance for Children, Youth and Families, survivor of incest, sexual abuse and cocaine, positive for 21 years.
June 5, 2011, marks 30 years since the first published accounts of what
became known as AIDS. For this anniversary, we asked 31 long-term
survivors who’ve appeared in POZ what
moves and sustains them and whether they think they’ll live to see a
cure. Why 31? One for each year, and one more for good luck.
What is the most helpful thing anyone has said to you over your years living with HIV?
The day I was diagnosed with HIV, three white men gave me the diagnosis. Meanwhile, the HIV test counselor sat quietly on a stool in the corner. She was able to see that as they talked at me, I began to die. In 1990 in many clinics it was not the person who tested you who gave you the news if your test came back positive. Therefore, she did not say anything as they talked and told me the baby I was carrying and I had less than five years to live.
I remember looking at her, wanting her to help me. As I was leaving the room, she broke her silence and said to me, “Where is your faith?” Two hours later, as I stood on a bridge planning to jump, I heard her voice saying, “Where is your faith?” Twenty years later, those words encourage me to do the work I do.
What change or development in your treatment for HIV has most
affected your life—for better or worse?
Since the beginning, I was unsure of my ability to commit to take the medicines needed to treat HIV. I remember when my doctor first offered me a medical regimen—it was about 15 pills a day. I said, “No way. Call me when you can get that down to three or four pills a day.”
They brought me options to take maybe eight or 10 pills a day, and I continued to be unable to commit. In 2004, a new physician said, “If I find you three or four pills [a day], will you take them?” I said, “Yes.”
Two days later she called and said, “Please go to the pharmacy and get your new prescriptions. Then come by my office to fill your pill box.” My CD4 labs on that day were in the single digits. Now, seven years later, my CD4 count is over 900 with those same four pills.
What is your refuge from thinking about and dealing with your
My life is so wonderful today. I contribute it to my faith and relationship with God. HIV has allowed me to see the world very differently—to say, “It’s all good.” And it has taught me to smile and laugh, to laugh a lot.
I do not spend time thinking about HIV/AIDS. I know God has got me, so I spend my time enjoying my husband of six years, Nathaniel, and our family. I enjoy attending church, listening to music—gospel, jazz, old-school R&B. I have always enjoyed fine arts, going to the Kennedy Center or catching a show at the historic Lincoln Theater. Three more things I really love are to shop, shop and shop some more.
What has been your major economic challenge since testing positive?
This will require me to be honest with a secret insecurity. One thing I wish I could afford is the dental care I need to make my smile as beautiful as I feel my life is today. Even with a full-time job, I cannot afford the cost of the needed work for my teeth, and I do not qualify for other dental support.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
Early in my diagnoses, as I rebuilt my lost faith, all I had was my youngest son, Isaiah. I was just living to be there for him. Through our relationship I understood the need to use my voice to help and work with other women.
Isaiah is HIV negative, unlike many other children I met in the early ’90s. This opened me to helping others, and I believe by helping others I get strength to take the next step. I began talking and advocating for other mothers in the clinic. When they got the services they needed, it made me feel good inside—in a way I’d never felt before. I realized I was called to be a voice and helper in this community.
Stigma has not affected me much. After all, I don’t know if HIV is the worst thing I can tell you about my life. I found much more shame for many years about my lack of education, two rapes, my physical body and my former drug use. I remember thinking, “After all, what can the word do to me that I have not done to myself?” After 22 years of drug recovery, maturity in my faith, learning to love me for me, and many hours of mental health therapy, I can say, “It’s all good.”
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I do not know if I really think there will be a cure in my lifetime, but if there were a cure, I would be in line for it. I spend more time thinking (I call it Linda’s theory), and I believe if we could just get people to understand the value of their health and how their behaviors impact them, then we could significantly decrease the number of new cases of HIV. This understanding has to begin in our children as toddlers; it has to happen in our faith assemblies, schools, communities and media opportunities.
What advice would you give to someone newly diagnosed?
If you are reading this and are newly diagnosed—or just looking for hope—I want you to know there is help and guidance for you. HIV isn’t the end. For me it was a new, brighter beginning. Do not be afraid to tell someone today about your diagnosis. You do not have to live in fear or shame. Hold your head up and smile again. Seek out a family member or friend to confide in. If you don’t have one, ask the clinic staff for a peer you can talk to who’s thinking and living positively. Build a partnership with your health care provider that is built on mutual respect.
And mostly, simply: Breathe and believe.
to read this article as it
appeared in the June 2011 issue.
read more of our "30 Years of AIDS" coverage.
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