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Jun15

Poz Women Share their Stories: “What doesn’t kill you”

Monday, 15 June 2015 Written by // Guest Authors - Revolving Door Categories // Women, Living with HIV, Population Specific , Revolving Door, Guest Authors

A week of women’s stories. The fifth is by Aditi from an anthology of stories of South Asian positive women, all members of a Toronto-based support group run by the Alliance for South Asian AIDS Prevention (ASAAP)

Poz Women Share their Stories:  “What doesn’t kill you”

This story first appeared in More than Fiction, a publication of ASAAP  which you can read online here

I was the youngest child of a very big family, and was raised by my grandma whom I loved with all my heart. When I was in high school, I met a guy and we started dating. We eloped. I got pregnant and he left me back home with his mother. I gave birth, and got very sick and lost a lot of blood. I needed a blood transfusion, so one of my family members said that if he couldn’t save my life, he could at least save my baby’s, and the doctor took his blood.

A few months after giving birth, my baby passed away and I left my country to come to Canada with my husband. I got pregnant again, and that’s when the family member who gave me blood called and told me that he had just found out that he was HIV positive. He told me that I needed to get tested.

I prayed to God that my husband and my child would be ok. But both of them tested HIV positive. I had my child tested again after a couple of years, and I was so relieved to know that the results came back negative. It was the happiest time of my life. From then, I started taking better care of my health and my family’s health.

When I found out I was HIV positive, I didn’t have any emotional reaction to the news. I felt that I had to be strong.

My doctor told me the news three times and he asked if I was ok. I reassured him that I was fine. When I arrived home, I told my husband that my blood work came back positive. My husband gave me a warm hug and told me not to worry because everything would be ok. He wasn’t angry because he had faith in me and trusted me. He said he loved me no matter what. I was so thankful for his support. He didn’t judge me. We were in this together.

"I had to be strong for everyone’s sake"

At the time when both my husband and child had been diagnosed HIV positive, I felt like I wanted to die because I had infected the most innocent member of our family. But I told myself I had to be strong for everyone’s sake so we could pull through the crisis. I turned to my faith to help me cope. All the prayers I recited came through for me when my child was re-tested and was diagnosed HIV-negative.

But the virus did catch up with me, and after a few years, I got really sick and had to go to emergency. After one hour, they pronounced me dead. For 45 minutes, my body was lifeless. The doctor called my husband to tell him the news. As he was doing that, two nurses came into my room and they saw me sitting up on the gurney. They ran off screaming, and called for the medical team to come and see me.

The doctors asked me questions to make sure I was really ok. After a few minutes, I saw three doctors and they started asking me questions like, was I ok? I got all my vital organs checked again, and everything was normal. I didn’t sleep for four days because I was so scared that I’d die again.

I don’t tell anyone outside my immediate circle of family and close friends about my HIV status because I don’t know how they’re going to react. I keep it to myself. But it’s very hard to have to hide it all the time because I get sick very often. When friends and relatives ask, I have to lie and tell them that I have cancer or another chronic illness that is more socially acceptable. If they ever found out what I really had, they would spread the news to others in the community.

I’ve heard people say that if someone has HIV, they don’t deserve to live. I don’t subscribe to that way of thinking. I’ve come a long way through my own experience living with HIV.

 "I often hear a voice in my head telling me that everything will be fine."

My faith has kept me strong. I believe in God and whenever I have bad days, I’ll go to the temple and sit there for hours until I get my fill and I feel good again. I often hear a voice in my head telling me that everything will be fine.

My doctor is also a big support. She calls me her miracle patient because I always have a smile on my face no matter how bad the illness can get. I have a very strong belief in my ability to overcome. I know in my heart that God is with me, and that nothing will happen to me until my time comes.

I tell my family this all the time, and I encourage them to be happy and to enjoy their lives. I like doing my garden. I feel free from stress and I love looking at the flowers. They make me feel good about myself. Most importantly, I love spending time with my family. My family means the world to me. Every Sunday, we have family meetings where we share with each other everything that happened during the week. Sometimes we go out for dinner, or a movie, or a long drive, so we can spend some quality time in one another’s company.

Twenty years ago, I was very sick and everyone thought I was going to die, but I’m still here, living, breathing, and loving all that I am, and every moment I’m alive.

About More than Fiction: Poz women Share their Stories.

In 2013 women of ELAN’s social support group at ASAAP talked about how to address a lack of representation in the HIV/AIDS movement, a recurring theme. Their discussions stemmed from feelings of frustration as they participated in research studies and focus groups yet, did not see their voices as they wanted represented in larger dialogue. The result of their discussion was a stated recommendation for a project that would enable them to create and share their story; not under the umbrella of a research study with summarized findings but simply as a collection of stories that reflect how they see their struggles and their strengths. This was the impetus for ‘More Than Fiction.’

The twelve authors of these brave and lucid narratives were engaged in a series of workshops that further developed their capacity for storytelling. Guided by dedicated facilitators and community advisors, creative writing, poetry, and photo voice were some of the modes that were explored over the course of a 4-month period.

The authors have each chosen an alias to reflect the silencing impact of stigma and discrimination that has denied many people living with HIV/AIDS the right to live openly. Their stories capture the profound isolation that living a secret life can entail, but they also give voice to the self-compassion and resilience that such challenges engender. 

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