As part of a collaboration with our longtime partner organization Christie's Place, The Well Project will be sharing stories from their book "Healing Hope: A woven tapestry of strength and solace" as blog entries on our A Girl Like Me platform. The views and opinions expressed in this project are those of the authors and do not necessarily reflect the views or positions of The Well Project.
Written submission by Wanda Lien-Rojas
Para leer en español, haga clic aquí.
It was 1985, I was 21 years old and President Ronald Reagan announced to the world the genesis of a new disease; G.R.I.D. or the Gay Related Immune Disorder, later known as Acquired Immune Deficiency Syndrome or AIDS. I specifically recall hearing the words 'gay-related' so of course I thought I had nothing to worry about.
I was 21 years old and just started dating boys. My first boyfriend I met in church. The relationship ended even before it began. I'm not sure that I knew what I was doing; I was a late bloomer for sure. My second boyfriend was my neighbor's brother. And oh my goodness, he was gorgeous! Good looks, great personality and very sweet indeed. His name was G.P. I was head over heels in love with this guy. He had to be the one, the one and only. The boy I would marry for sure! During our courtship I found out that I wasn't the only one wanting to be with G.P. All the girls wanted to be with him too. And most shocking of all was when I found out he was seeing a man behind my back. I couldn't believe it. My handsome man was actually gay and only with me so his family wouldn't find out about his lover J.R. I never knew anybody gay before and I didn't like being second choice. Unfortunately, I was already pregnant and my baby's daddy was with somebody else. I kept trying to convince G.P. to stay with me, but even having his baby wouldn't convince him. I wasn't up for a battle of the sexes. I let G.P. go and decided to be alone with my baby. I had become a statistic. A young woman with no husband and no daddy for my baby boy. Sadly, my mistakes would follow me for the rest of my life.
It wasn't long before I started hearing rumors. People were saying that my ex's lover J.R. was selling all of his belongings. My friends told me maybe J.R. was dying of G.R.I.D. and that I should get tested too because my ex and J.R. were sleeping together. Now I was really scared, alone with a baby and not sure what to do. I called my gynecologist's office and made an appointment for a test called Elisa, Western Blot, and an HIV differentiation. A month later I was told the first two tests were positive and the doctor was waiting for the third test result. Long story short, the third test came back negative and I was told I had nothing to worry about. Back then, secretaries gave test results over the phone—what a big mistake. The doctor neglected to call me with more direction. I didn't fit the criteria for somebody with G.R.I.D. I did nothing else because I wanted to believe I was not infected.
Now it was March of 1986, my son was 6 months old and I had been alone for some time. A friend of mine had introduced me to a single guy friend but I was reluctant to start dating again. I was still hurting and on the rebound.
This guy was really nice. His name was Ernesto. I told him about the testing for this gay disease and how two of the tests came back positive. I told Ernesto I was not ready to start another relationship. Ernesto respected my decision and we chose to stay friends. He would come to visit and we would have so much fun. He enjoyed playing with my son too. I really started looking forward to Ernesto visiting us. Every time he came over, he would bring a toy for my son and bring food for us to cook together. We dated for five months and decided to consummate our relationship. Ernesto told me he felt I was his other half of the orange, which in English meant soulmate. I was in love with him and he made our lives so happy. My son had a daddy and I wasn't alone anymore.
It was August 1989 and Ernesto and I found ourselves pregnant. We had planned this baby and we were so excited. What a perfect time for us. I was getting everything I had ever wanted. My little family—a daddy, a mommy, and two children. So now we were pregnant, living in La Jolla and walking the beach every day. Life was good and we were very happy. We went to my gynecology appointments on a regular basis. My baby was healthy and I was feeling awesome.
But circumstance would rain on our parade. I was six months pregnant and this new gynecologist would tell us I had HIV. We thought the past was left in the past but now we were told our baby would die. We were devastated. The doctor suggested we abort. We thought the guy was crazy. Ernesto and I didn't know what to do. All we could do was cry. We were heartbroken. We loved our baby so much already. I told Ernesto we were going to have this baby no matter what. Now we started making deals with God. "Please let our baby be healthy, please let me be alright."
I had been diagnosed, misdiagnosed, and now re-diagnosed. All I could think of was am I positive for HIV or not! How could this happen?
On March 30th, 1990 we had a healthy 10 lb. 11 and 1/2 oz. baby boy! God had smiled upon us. Even Lady Luck was on our side. We were so happy our baby boy was so healthy. I knew we would have to have him tested. We still had no idea what to do about my diagnosis. My children's pediatrician referred us to U.C.S.D. Mother and Child Clinic in San Diego.
U.C.S.D. was the beginning of us understanding HIV infection. They tested our baby and it took three years to deem him negative. He would be fine and we were more than grateful. But for myself, I would find out I did have HIV infection. My ex-gay boyfriend gave me G.R.I.D.
I started to see an infectious disease doctor S.H. I was fortunate to have been so healthy. Now I was 26 years old and had to come to the terms of having a disease that would eventually kill me. Dr. S.H. put me on a medication called AZT. There were not very many medications way back then. AZT was readily available and there was only a couple of drugs in trials. The social worker referred me to a Women's Center and this is where our lives would change for the better.
This Woman's Center felt like a safe haven. The people there were so nice. We were made to feel welcome. The center ran support groups a few times a week. I joined the women's group first. We talked a lot about what to do with our children if we died. Then there was a support group for men and women. In this group we talked a lot about how to read our labs and how new medicine was coming out. The most helpful group was the Sunday Spanish-speaking group. It was here my husband Ernesto found a lot of support. He was Spanish-speaking and now could understand information about me being HIV-positive. After a while my husband and I were coming to terms about my HIV status. We learned HIV was only a part of our lives, not our whole lives.
Over the years we met a lot of HIV-positive people. We no longer felt lost and alone. According to my labs and federal guidelines I was doing quite well. We were finding more courage every day. A couple of the ladies helped my husband get tested too. He was HIV negative. With support we got our older son tested also. My little family was HIV-negative. I felt so blessed and grateful. What a relief for me. How could I live with myself if I had infected any of them? A diagnosis in the nineties meant you had ten years to live. Not many people were doing well due to the lack of medications. We were attending a funeral every week. People in the gay community were dying right before our eyes. Times were pretty scary back then. I kept wondering if I was next. I owe my survival to the gay community. The gay population were the guinea pigs in studies. They went through hell testing medications and being poked and pried.
My compassion for others became real. So many incredible people. Each of them with their own stories. There were HIV-positive men, women, and even children. The faces of AIDS had begun to change before my own eyes. I found myself speaking out about HIV and how women and children were the new faces of AIDS. I spoke at high schools, colleges, conferences, to the newspaper, and even on television. The world needed to know AIDS was affecting women and children. AIDS was not a gay disease. AIDS was a people disease.
I talked a lot about my fear of getting sick and dying. What would become of my husband and two sons? I worried and cried all the time. But I found a lot of support by speaking about HIV. I became a peer advocate at the center. Every day I helped women who were finding out they had HIV infection. My life began to change a little every day. There wasn't a lot of hope back then with only AZT and a couple of drugs in trials. The future would bring promise, hope, new medications, and survival to hundreds of thousands of people. I was fortunate to be one of them.
Over the years we watched our children grow up and become self-sustaining adults. My worries changed to celebrations. I was grateful for the time with my husband and two sons. I found sharing my story brought others hope. This was very good for me. I became confident and hopeful that I had a second chance at my life. My dreams of seeing my boys become adults and have their own families have come to pass. I want to grow old with my husband. Thirty-five years is not enough; I want thirty-five years more. When it's time for me to leave this life, I want to know I have fought a good fight. That I went out kicking and screaming. I want to be remembered as having a brave heart.
It hasn't always been easy. I have cried every day for thirty-five years. If tears cleanse the soul, as some people say, I bet I have a squeaky clean one. And if God really counts our tears, mine are infinite in measure. Sometimes I'm ashamed of how I worried my family so much. My poor mother, God rest her soul, thought she was going to bury her daughter. My brothers and sisters still worry about me to this day. Sometimes society condemns those who don't follow the rules. Sex before marriage is a big no, so I deserve the diagnosis. There have been times I felt I wore a scarlet letter around my neck, showing my shame. And my husband, he is still making deals with God to let me live. He has acted on a thirty-five-year-old promise to this day. He shaves his head, giving up his hair, every 6 months so God will continue to watch over me and let me live.
Today I recalled the emotional battles I have overcome. I see the journey of others that gave me strength and hope. Today there are so many medications available. HIV is no longer a death sentence. Hope is everywhere. Today is a good time for people living with HIV/AIDS.
I am grateful for those that are no longer with us, but fought a courageous fight. They didn't die for nothing but instead led us in the battle against HIV/AIDS. Their sacrifices made way for modern medicine to find solutions for those of us today.
So I guess when the going gets tough the tough really do get going. It's a choice I choose to make every day.
— God, please let me see my grandchildren grow up and have families of their own.