Wednesday, May 16, 2012

My First Speech About My Daughter Dying of AIDS

I remember the first speech that I gave. It was 1996 and I was at the BC Children's Hospital Grand Rounds in Vancouver. Not only was I a new speaker, with all the fear involved in giving my very first speech - but I was talking on a topic that I had kept secret from many people for the last two years. After my nine-month old daughter, Katie, became sick with pneumonia, I was told she had AIDS and that I had HIV.

I could vaguely hear the infectious disease specialist on stage speaking about the basic science of children with HIV. It was like a dream, everything seemed to be in slow motion, and then he turned to introduce me, the mother and patient. I remember singing to myself before I walked onto the platform - it was a song by Queen "We Are The Champions" and it gave me strength to walk up the steps, covered in black, rubber matting. I shook the doctor's hand and stood before my audience.

It was precisely at that moment, as I stared into the crowd seated before me, that I saw someone hurriedly enter the auditorium... it was my daughter's pediatrician and immediately I froze. I hadn't seen Jane since Katie's death two years earlier - I heard myself breath in sharply and a pain stabbed at my heart. She sat half way down the aisle and, looking back at me, she gently smiled. I knew I had a great, trusted friend in the audience and suddenly a warm blanket enveloped me... I could do this!

As I started to tell the story of how I had discovered my daughter had AIDS and that I had HIV, I struggled to remain composed. I was tired from two years of telling lies about her death and finally I was going to be able to let people know what it was like living under the veil of stigma, where healthcare staff, doctors and hospice workers were my only confidantes. I felt it was so important for the people listening to me realized that they are the lifeline to people hiding with any stigma. Jane knew.. she had been a friend at the end of the phone line, the arm around my shoulders, the doctor not afraid to speak out on my behalf.

As I read the words on the sheet, I was painfully aware that I was not yet a confident speaker and I knew that if I decided to go completely public then I would have to look directly into people's eyes, without fear of judgement.

It was on that day that I realized that this would be the way I could remember Katie's life and that people could learn more about families living with AIDS. I knew on that day that my career path would take me down a road where I had so long feared to travel and that I would receive immeasurable support along the way.

That is the day that I decided to become a speaker about children and families living with HIV and AIDS and I have never regretted it.

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