Five hundred hours hadn't seemed like that much. I guess they were impressed by the fact that a woman with HIV had given so much back to her community, but it doesn't surprise us, does it? Many of us who are HIV positive work in our community because we want to help people who are living the things we have lived. And, really, after the work of living each day with HIV, what's a little volunteering on top?!
I was thrilled to learn that I was one of six women from across the country selected for the award that year. But it wasn't the award or the ceremony or the fancy hotel that meant the most to me. It was that phone call from Jennifer. For 14 years I had been doing education and outreach around HIV/AIDS, and while I certainly wasn't doing it for the glamour and fame, it was amazing to be recognized for my contribution. It made me cry.
Winning awards was not my intention, I was just living my life. But, looking back, maybe it is remarkable how far I've come. I was diagnosed with HIV on December 15, 1993. I was 24, living in St. John's and eight months pregnant with my second child. I found out during a visit to my obstetrician. He did not handle it very well, and I remember him saying as he eagerly showed me to his office door, "If anyone asks why you are crying, just tell them there is something wrong with the baby."
I was uncertain of my future, uncertain of my unborn baby's HIV status, uncertain of everything, because back in 1993 a diagnosis of HIV meant certain death. What followed was a grey period: One day I was fine and the next day my whole world turned upside down. My husband even suggested suicide (he was diagnosed a short time after me) and for a moment it made all the sense in the world -- he and I weren't going to live very long and I was convinced that my baby would be born with the virus. I didn't want to live with the thought of friends and family turning their backs on us while we died.
For a large part of my life, I had lived in silence -- it was my coping mechanism. I was raised in an abusive home fueled by alcohol and drug dependence. Growing up, I was afraid to say anything or speak up for fear that I would be beaten. Being silent kept me safe. However, with my diagnosis, I knew silence wasn't going to work. I needed to talk about it.
Within weeks, I started to look around for information and help. I didn't know where to start, so my friend pulled out the phone book and looked under A for AIDS. No luck. We dialed directory assistance and got the number for the Newfoundland & Labrador AIDS Committee (as the AIDS Committee of Newfoundland & Labrador was then called). I phoned and made an appointment for the next day.
I still remember going through the doors of the agency building. I was afraid someone would see me. As I climbed the stairs, another woman was coming down. It was Trudy Parsons. I recognized her, as she was an HIV-positive woman who was very public about her status and was well known in the province. She said hello and we stopped briefly to chat. I told her I had just been diagnosed. She put her hand on my shoulder and said, "It's going to be OK." We both remember it. It was the beginning of a friendship that lasts to this day.
I quickly got involved in the agency, both as a client and a volunteer. I joined a women's retreat led by Trudy. We were about 20 women, and I soon realized that many of us shared more than just HIV; poverty and domestic violence were common in our lives. I saw a link between those factors and our status, and I knew I wanted to do something about it.
I started volunteering as a public speaker. I wanted to raise awareness, teach prevention and battle stigma. But it also became my new coping mechanism -- talking about my status helped me accept it. Trudy and I did a series of educational talks in public schools across the province and at the nursing and medical schools here in Newfoundland.
I loved my husband and felt very sad at his lack of support as an HIV-positive heterosexual man. But he did not like that I was speaking in public, so I would do it without telling him. When he did find out, it would send him into a rage. He never wanted to discuss the disease. He turned more and more to alcohol and eventually prescription and street drugs to cope. He became very abusive and violent toward me. This abuse went on for many years until I took my children and left. My health was deteriorating because of the stress of the relationship and I had reached my breaking point. Eventually, he gave up drinking and we worked things out. He was trying to get back on track, but it was too late. He passed away in 2004.
After my husband was gone I felt free to begin to find the voice that had been silenced for all those years. I became more public, doing more presentations and media interviews. I started to feel more empowered. People listened to me and didn't criticize me ... something that never happened in my life, ever!
At a presentation I went to in 2006, David Hall, an activist who was living in Lesotho, Africa, talked about how women and girls there suffer abuse by their men and how they make up more than half of the HIV infections. Living in poverty and being abused sounded all too familiar to me. I spoke with him and mentioned off-handedly that I would be interested in going to Africa to do whatever I could to help.
A short time later, I received a call from the executive director of the AIDS Committee of Newfoundland & Labrador (ACNL), who asked me, "How would you like to go to Africa?" ACNL was partnering with Oxfam Canada to send a group of volunteers to Lesotho and Zimbabwe to address the issues of gender-based violence and HIV. What an honour!
During our two-week visit, I spoke to church leaders and parishioners, community-based caregivers, traditional healers, women's groups, youth and people living with HIV/AIDS. I was able to talk to women about the importance of getting tested, supporting each other, building networks and speaking out. It was a powerful and sobering experience to see how communities pulled together to face the epidemic, especially the women, who were trying to change cultural norms and advocate for their rights. Silent for so long, these African women were now finding their voice ... just like me.
Upon my return, I continued my involvement with Oxfam, giving training workshops for volunteers and even speaking about my life and my experience in Africa at its annual national assembly in Ottawa. A year later, Jennifer Brammer called to talk with me about the nomination for the Flare magazine volunteer awards.
When I think of what motivates me to keep going, I think of my children, who are both HIV negative and now in their teens. They have been my constant support and give me unconditional love. When I was first diagnosed 16 years ago, I thought to myself, "I will never see them grow up, never see my daughter graduate, never see my son go to his first high school dance with a date." Happily, I was wrong. I went to my daughter's grade 12 graduation on my 40th birthday. I saw my son go to his first high school dance. Yes, I have had some terrible experiences, but I feel blessed that I have lived long enough to witness many beautiful things.
My goal is to help others understand that HIV is not just a health issue but also an environmental, social and economic one. I try to break down stereotypes, encourage access to resources, change policy and break the silence around the illness. HIV should be understood and not feared. Sexuality, race, age and religion don't matter -- what matters is that we are all human. It is not for anyone to judge, but rather to show compassion and respect for those living with and affected by HIV/AIDS. One of my favorite quotes is by Plato: "Be kind, for everyone is fighting a hard battle."
Photograph: Greg Locke