HOCC Women Moving Forward: The Journey
How could I have known that the greatest challenge of my life was not the ending of a 30 year marriage, bankruptcy and becoming homeless. I kept thinking “I’ll get through this; at least I have my good health. Things can only get better – “Right" I found a place where I could live, the position of house-sitting gave me the space to be alone to process this part of my life.
I continued to work at my business as a holistic health educator, teaching yoga, stress reduction, nutritional classes, and women’s wellness retreats. I had the unique opportunity of walking my talk, and to this day, I believe the work that I did, was also the glue that held me together during that chaotic time.
Having been with my first husband since the age of 13, I was now living alone for the very first time, believing that at the age of 48, I would never marry again.
During this time of struggle, spring arrived and I met a man who became a friend. I was grateful to meet someone who was kind, generous, and truly seemed to care about me. He too, had been through a divorce after 25 years of marriage. I believed that I had met a man who could express himself, someone who was not afraid to talk about his feelings, he made me laugh and I felt alive again.
Spring turned into summer we began to date, my business was doing well, the relationship was moving forward and life was improving. Ironically on Labor Day, I awoke to my body at war with itself, excruciating pain in my muscles and joints, a fever and chills all lasting two weeks.
Eleven months later, a routine exam changed everything. I tested positive for the HIV virus. Panicked and confused, I shared this devastating news with my new partner. Two days later, this well known pillar of the community, my companion, confessed that he had been living with the virus for 6 years.
The depth of emotional paralysis was indescribable. It was than I understood the significance of the Labor Day pain and agony. I was experiencing a classic case of serum conversion – “the HIV virus was making its way into my body” was how the doctor explained it to me.
The man, who said he love me, had betrayed me. He expected me to hide what happened and I did. We even married as planned and everyone believed we were a normal couple. While out in public, I appeared to be happy, when alone I could only feel numb, and as time went by, I began to understand that I could not hold this secret in any longer. It was making me emotionally and physically ill and my grown children were sensing something was not right with me.
After some counseling, I realized I needed to tell my family about my condition. I began to open myself to all the feelings I had buried: anger, fear of dying, constant fear of rejection as a person living with the stigma of HIV, understanding I would have to be dependent on powerful medications for the rest of my life.
I told myself, “If I try hard enough, I can forgive him”, it didn't work. I disclosed my status to some close friends. My husband and I separated and I embarked on a powerful healing journey, I was done protecting the man who infected me.
I began to travel to Boston to seek out other HIV positive women and I found HOCC and got the support and knowledge to deal with this disease. I enrolled in some trainings, to better understand what I was living with. Following the trainings, I began to facilitate a support group for women living with HIV, and shared some of the health practices that I continue to teach, so that they too, may take better care of themselves.
Speaking my truth began to help me heal, and at the same time help others. I spoke out publicly for the first time on December 1st, 2008 at the World AIDS Day at Fitchburg State College. I hoped to bring awareness to this epidemic, and by educating others, maybe prevent others from becoming infected.
My message is that this can happen to ANYONE. This is not; I repeat NOT a virus that only happens to gay men and IV drug users. The fact is, one quarter of all people living with HIV do not know they have it!!! One time of unprotected sex can lead to a lifetime of living with HIV – it doesn’t go away! Unless we all become educated about this disease people will continue to infect others knowingly or unknowingly.
If we ignore this epidemic, the number of HIV cases among women and teens will continue to rise.
Please get tested and protect yourself.
Today, I am a strong 48 year old woman with an important story to tell. My journey in becoming strong has been long and often challenged by the choices I have made in my life. It all starts with now knowing that in my past, I made bad choices in my relationships. In 1989 I met a man and got married. He was very much like my father. He was very controlling and like my father, I was now under the control of yet another man that I loved.
It turns out that my husband was having relationships outside of our marriage without my knowledge, until he had a horrible case of herpes all over his body. At this time I was nine months pregnant. His doctors said that I should get tested too. Our family doctor tested me for herpes and HIV. Both of the tests were negative. After my son was born, my husband and I were estranged but we continued to connect on and off. He was insisting to have me back and when he told me he was very sick with a heart condition, I went back with him.
When my son was 7 years old, I began having chronic severe yeast infections, so my doctor wanted me tested me for HIV again. This time I tested positive. My husband accused me of getting the virus from someone else during the time we were separated, so I demanded that he come with me so we could both get tested together. Our doctor didn’t even take any blood from him because she already knew that he was positive. Looking back, I wished that our family doctor told me that my husband was positive but today I guess I understand more about the disclosure issues that surround HIV. When I look back on it now, our doctor dropped hints, like always suggesting that I use condoms with my husband. Of course I dismissed that because he was my husband and I didn’t think we needed to use protection and I also knew he would never agree with using condoms. Today I know that he had put both me and our son at risk by not disclosing to me he was HIV positive but then again I really didn’t believe I could be at risk for HIV and certainly not my son. I am grateful today that my son is HIV negative.
The time following my positive diagnosis was really hard for me and I totally ran away from accepting it, hitting a real low and I even started using illegal drugs. I didn’t tell anyone or do anything about it. I remained totally devastated that my husband passed it to me and remained silent about my HIV status because my husband told me not to tell anyone that we were positive, not even our son or my mother. He told me that people wouldn’t accept it and treat me differently. I lived liked this for four years until one day I told my mother.
I thank my mother for her acceptance of me and her encouragement that led me to getting the support I really needed to live positively with HIV. This part of my journey has been empowering and has opened many doors in my life. The great thing about my story is that I am here today and I’m stronger than ever! I have had several attempts to stop using drugs but today I have been sober for nine months. I’ve been in a healthy relationship for 7 years with a man who is both HIV negative and sober for twelve years, he came into the relationship HIV negative and remains negative. I’m taking care of myself and I have created success in my life. For years I have dreamed about telling my son that I’m positive but could not for I was still under his father’s control not to tell him. But this year, I told my son that I am HIV positive and that I am Ok.
As I move through this process of living with the virus, I have grown and learned to accept my diagnosis. I’ve gained strength and courage to help other women. Today I am part of a team of HIV positive women who have been trained to help other women like me know how to live positively with HIV. We are known as the WHEL Team (Women’s Health and Educational Leadership Team) and have and plan on presenting future workshops for example on “stigma and disclosure” and “HIV prevention and transmission” across Massachusetts.
My 13 year journey of living with HIV is like many other women who have trusted or been controlled by others, who have made bad choices, who have isolated and silenced themselves because of fear, guilt and shame. If I had continued on this path I would not be here writing about my journey for my journey would likely have ended years ago. My message today is not to do this alone, to join a support group of other women living with HIV, to start believing in yourself and learn you have the power to do things differently, and seek a path that will truly bring you towards healthier living and good health.
I have been positive for 25 years and against all odds, I’ve overcome struggle after struggle, and I have become a stronger person as a result. Like many women, I did things in my past that I wouldn’t do today to keep myself and my children alive and well.
I contracted HIV while having sex for a fee. I used the money to support my drug addiction. I started smoking crack and drinking shortly after having four daughters, who are now lovely young women. For me, smoking crack and drinking went hand in hand. I couldn’t have one without the other. I drank and drugged throughout the time I was also raising my children.
In 1984, I was arrested and sent to federal prison. My children were raised by an aunt while I was incarcerated. During this time, my past began to haunt me. When I arrived in Framingham, I met up with a girlfriend from my neighborhood. She wanted to get tested for the virus, but she was scared. The buddy system worked for us, because we found the strength to get tested together. Two weeks later we received our test results. She was negative, and I was positive. I didn’t know what to do with the news. I never received any HIV drugs, HIV counseling or any other information about the virus. After I got over the shock of my diagnosis, I buried the truth inside myself.
During my five years in prison, I never received any medical care. In 1989, when I finished my pre-release, I resumed my old life, which included drinking and drugging. I kept up my old habits for three months before I got very ill. I was living alone and one day I got real sick and went to the emergency room at a local hospital, I could barely walk but, after being seen by a doctor they sent me home. I thought because they had sent me home that I was okay, but I just got sicker. I know now that they should have known how sick I was because I told them I was HIV positive. I remained so sick when I got home and all I could do is just lay on the couch, in fact my partner found me passed out and not breathing and I barely made it back to the hospital. I was admitted this time and ended up in the ICU for two weeks and remained in the hospital for a total of 75 days with pneumonia.
When I was transferred to a regular room I was so weak I couldn’t even walk and they kept me in bed and kept me on oxygen to help me breathe. I struggled to get better each day and I told myself I was going to fight this. My belief was that I had the disease; the disease did not have me. I remember feeling that I was invested in getting better but it didn’t feel like the staff and doctors were really helping me to get better by keeping me isolated and in bed the whole 75 days. I wondered if I was being treated this way because I was HIV-positive, because I was poor, or because I was an addict.
Following my discharge from the hospital I decided to go to another health care center in Cambridge and I finally received the medical care I needed to take care of myself. On my first visit, my doctor told me I had a T-cell count of two and I was diagnosed with AIDS. The staff started teaching me about HIV and I learned about the importance of taking my medications and adhering to a drug cocktail that could save my life. Although I got real good at taking my medications – all I can remember is just crying a lot. It seemed all I could do was cry, but I did start to get stronger.
By 1990, I got custody of my children. I felt like I needed to tell them that I was HIV-positive, so with help on how to disclose to help them understand, I told each of my daughters one by one.
Today, I continue to learn about HIV/AIDS by educating myself as much as I can. When you find out that you are HIV positive the world around you seems to stop, I know it did for me. But the support I got and continue to receive from my clinic and organizations like HOCC have made my life easier. In fact, today I give back to the community by starting a support group in Cambridge, I sitting on five HIV advisory boards, and currently working two jobs in the field of HIV/AIDS.
I have been clean and sober for many years. Most recently, my daughter told me how proud she was of me and what I’ve accomplished. That meant so much to me. I have overcome so many barriers, so that I may lead a healthy life, be a good mother and grandmother, and be an advocate for other women I wish I had 35 years ago. Having AIDS has affected my life in a way to help others by sharing my strength and hope for each other. All I can say is that I wish I knew then, what I know now. Take my message and get educated about HIV/AIDS today.