Healing Hope: A Woven Tapestry of Strength and Solace

Foreword

Kathleen Grove, Ph.D.

Christie’s Place Board President

Contemporary social relations are marked by visibility. Private companies keep track of our spending habits and mobility. In public spaces, surveillance cameras watch over us. Privately we post pictures and stories about our lives on social media. In our culture, it is easy to assume that we are seen and that we are understood. And yet, in the midst of this visible or even hyper-visible world, there are people whose experience is hidden from view due to social, historical, and political factors.

In the early years of the HIV epidemic, women were invisible- absent from research, medical commentary and practice, and the mainstream media. In the past five decades, scientists and medical professionals have learned a lot about HIV treatment and prevention, but the cultural narratives still focus primarily on the experiences of men. Although women represent 20% of people living with HIV in the United States, they continue to be misrepresented, underserved, and invisible. Crystal, a woman I interviewed a few years ago, summed up the problem, We are still the ghost in everybody’s eyes. Women with HIV is still a secret. We are like that nasty little secret you put in the closet and don’t say anything about. Women are out there, but we are never seen. This is an epidemic and women aren’t even recognized on a regular basis. The stories in this book represent part of the effort to rectify the erasure of women’s experience.

The process of storytelling serves many important functions. For the individual, the sharing of a story is a way to heal trauma and build resilience. In these stories we witness women wrestling with hard truths, disappointments and betrayals. And yet, these experiences are the springboards for personal transformation. They contain facts but also counternarratives, a retelling that emphasizes a positive journey ahead. These are not passive victims. We see in these accounts a movement from stigma and helplessness into empowerment. As one woman writes, I am not HIV, rather I have HIV… I’m a survivor and you can be too. In these pages, you will see the ways in which women fight back against misinformation and stigma, educating others and becoming advocates.

Storytelling is also a way to build bridges and create community. When I met Christie Milton-Torres, the namesake of Christie’s Place, she told me that she wanted women to have a place where they could come together and share stories and be a resource to one another. Christie’s Place opened in 1996, a few years after her death, with the mission to create a safe space for women and families affected by HIV. Christie’s Place is mentioned many times in women’s stories. The organization offers counseling, therapy and support services. But as many women have shared, it offers community and hope. It is a place where women can access resources, witness the power of social relationships and be strengthened by a community of warriors and survivors.

Today, there are excellent medications that can make it possible for individuals to experience HIV as a chronic condition. Ideally after testing, women should be linked to a physician, enrolled in care, and started on medication with the eventual goal of viral suppression. Today there are still many gaps in this cascade of care. Only 63% of women who know they are HIV infected are virally suppressed.¹ High-quality care depends upon knowing the challenges and needs of women that impact their ability to stay in care. The invisibility of women with HIV is not merely a visual concept; it also captures a knowledge gap in which stereotypes and misinformation leave HIV-positive women vulnerable. Their needs are not clearly seen or addressed.

The stories in this book illuminate the need for a health care approach that recognizes historic and ongoing discrimination. In many ways women with HIV/AIDS represent canaries in the coal mine, reminding us of the multi-dimensional ways in which physical and mental health, intimate partner violence, poverty, lack of child care or transportation, inadequate housing and food insecurity are linked. When we pay attention to women’s stories, we can glean important information about how to improve prevention and treatment efforts for HIV and health care in general. We can begin to see the relationship between social justice, health and health policy more clearly. To combat HIV/AIDS and deliver health care that meets women’s needs, we have to bring to light the complicated and often unseen nature of women’s lives. Hearing their stories is a step toward seeing them.

1 Viral suppression is the percentage of people with diagnosed HIV who have less than 200 copies of HIV per milliliter of blood. Viral Suppression | Women | Gender | HIV by Group | HIV/AIDS | CDC

Prefacio

Kathleen Grove, Ph.D.

Palomar College

Las relaciones sociales contemporáneas tienen la marca de la visibilidad. Las empresas privadas hacen un seguimiento de nuestros hábitos de consumo y movilidad. En los espacios públicos, las cámaras de seguridad nos vigilan. En forma privada, publicamos fotos e historias sobre nuestras vidas en las redes sociales. Para nuestra cultura, es fácil suponer que somos vistos y comprendidos. No obstante, en medio de este mundo visible o incluso hipervisible, hay personas cuyas experiencias están ocultas a la vista debido a factores sociales, históricos y políticos.

En los primeros años de la epidemia del VIH, las mujeres eran invisibles. Estaban ausentes en la investigación, en la práctica y comentarios médicos, y en los principales medios de comunicación. En las últimas cinco décadas, los científicos y profesionales médicos han aprendido mucho sobre la prevención y el tratamiento del VIH, pero las narrativas culturales aún se enfocan principalmente en la experiencia del hombre. Aunque las mujeres representan el 20 por ciento de las personas que viven con VIH en los Estados Unidos, ellas siguen siendo malentendidas, desatendidas e invisibilizadas. Crystal, una mujer que entrevisté hace unos años, resumió el problema: Todavía somos el fantasma ante los ojos de los demás. Las mujeres con VIH todavía son un secreto. Somos como el secreto insignificante y desagradable que se guarda en el closet y del que no se habla. Allí estamos las mujeres, pero no quieren vernos. Se trata de una epidemia y las mujeres ni siquiera son reconocidas con regularidad. Las historias de este libro representan una parte del esfuerzo por rectificar a cancelación de la experiencia de la mujer.

El proceso de narración cumple muchas funciones importantes. Para cualquier persona, compartir una historia es una forma de sanar el trauma y construir resiliencia. En estas historias somos testigos de mujeres que lidian contra traiciones, desilusiones y verdades crudas. Sin embargo, estas experiencias resultan ser trampolines para la transformación personal. Contienen hechos, pero también contranarraciones, una renarración que enfatiza el viaje positivo por delante. Ellas no son víctimas pasivas. En estas representaciones vemos como pasan del estigma y la impotencia hacia el empoderamiento. Como escribe una mujer: No soy VIH, más bien tengo VIH… Lo que soy es una sobreviviente y tú también puedes serlo. En estas páginas, verás cómo hacen las mujeres para luchar contra la desinformación y el estigma, educando a los demás y convirtiéndose ellas mismas en defensoras.

La narración es además una forma de construir puentes y crear comunidad. Cuando conocí a Christie Milton-Torres, quien dio su nombre a Christie’s Place, ella me dijo que lo que quería era que las mujeres contaran con un lugar donde reunirse y compartir historias y, así, ser un recurso para las demás. Christie’s Place abrió en 1996, unos pocos años después de su muerte, con la misión de crear un espacio seguro para mujeres y familias afectadas por el VIH. Christie’s Place aparece muchas veces en las historias de las mujeres. Esta organización ofrece servicios de ayuda, consejería y terapia. Sin embargo, como han afirmado muchas mujeres, lo que realmente ofrece es comunidad y esperanza. Es un lugar donde las mujeres acceden a recursos, dan testimonio del poder de las relaciones sociales y se fortalecen por ser parte de una comunidad de guerreras y sobrevivientes.

En la actualidad, hay excelentes medicamentos que permiten que las personas experimenten el VIH como una afección crónica. Idealmente, después de la prueba, las mujeres deberán vincularse con un médico, inscribirse en la atención médica y comenzar con la medicación, con el objetivo final de la supresión viral. Hoy todavía existen muchos vacíos dentro de esta cascada de atención médica. De las mujeres que saben que están infectadas con el VIH, solo 63 por ciento presentan supresión viral.¹ En el caso de la mujer, su atención médica de alta calidad depende de conocer los desafíos y necesidades que afectan su capacidad de mantenerse bajo cuidado médico. La invisibilidad de las mujeres con VIH no es meramente un concepto visual, a su vez capta un vacío de conocimiento en el que los estereotipos y la desinformación vulneran a las mujeres seropositivas al VIH. No hay una clara visión ni orientación de sus necesidades.

Las historias de este libro ilustran la necesidad de un enfoque de la atención médica que reconozca la discriminación histórica y presente. En muchos sentidos, las mujeres con VIH / SIDA representan a los conejillos de indias, lo cual nos recuerda las multidimensionales formas en que a esto se vinculan la salud física y mental, violencia de pareja, pobreza, dificultades en el cuidado infantil o el transporte, vivienda inadecuada e inseguridad alimentaria. Si prestamos atención a las historias de las mujeres, lograremos cosechar información importante sobre cómo mejorar los esfuerzos de prevención y tratamiento del VIH y la atención médica en general. Lograremos ver con más claridad la relación entre justicia social, salud y política sanitaria. Si queremos combatir el VIH / SIDA y brindar una atención médica que responda a las necesidades de la mujer, tenemos que traer a la luz la naturaleza complicada y frecuentemente invisible de las vidas de las mujeres. Escuchar sus historias es un paso para poder verlas.

1La supresión viral es el porcentaje de personas con VIH diagnosticado que tiene menos de 200 copias del VIH por mililitro de sangre. Supresión viral | Mujer | Género | VIH por grupos | VIH / SIDA | Centros para el Control de Enfermedades (CDC por sus siglas en inglés)

A Daily Choice

Wanda Lien-Rojas

Written Submission

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