Good afternoon everyone: I’m here today representing both myself and our local AIDS Service Organization, ACCKWA (AIDS Committee of Cambridge, Kitchener, Waterloo and Area). I’m proud to announce that this month marks the 25th anniversary for ACCKWA. Just a few months ago I received both my Ontario Service Award for my 15 years of volunteering, as well as, the Education Award from ACCKWA. They’ve provided me with ways to gain courage, and not to feel ashamed of myself when I decide to help educate around living with HIV/AIDS.
I was diagnosed HIV+ in March, 1993, and became a client of ACCKWA in 1997, after moving here from my hometown London, Ontario in 1995. At the same time I also began volunteering to help achieve a better understanding of the disease, as well as become connected with others living with HIV.
I was adopted as an infant, my parents raised me as one of their own and never judged me along the way. Certainly later in my life there was concern when HIV became known as the gay disease, however my parents didn’t feel any different about me. My mother was proud of me, but unfortunately she went to her grave being told that I had a rare blood disorder. As they say, ‘mothers are not stupid’, and all I can say is thank you for being an accepting mother, thank you for teaching me to live my life with pride and dignity.
When my niece was only ten yrs old she sat on the couch beside me, looked up at me, and said ‘your gay, aren’t you Uncle Johnnie?’ I was utterly in shock. I took a moment and looked at her and nodded my head yes. I thank her to this day for being so frank and honest.
Prior to my world of living with HIV, I really had no desire to go to college or university, due to the time I was dedicating to my career as a classical ballet dancer. My training for this began when I was only ten years old. I dropped out of high-school for a couple of years to get some work experience, and then returned as an adult student to complete my grade 12. I then went on to dance professionally with four companies across Canada, over a seven year period.
During this time of having unprotected sex, and due to a lack of sex education in grade school, my life was later going to be taking a dramatic turn for the worse and I wasn’t even aware of it. When I was in grade school, sex education basically consisted of how women could prevent pregnancy and not much else. The unfortunate thing here is that HIV did not exist then, so information was not out there to be given. During the earliest years of HIV surfacing, I was simply going on with my life, my career, and it was not an issue.
Not knowing that I had contacted HIV, I felt my body wasn’t responding the way it should have been. Looking back, I’m not sure how but I went on to dance professionally for another couple of years. The ironic thing about my career was I was initially inspired by a touring group from the National Ballet of Canada that came to our elementary school to perform, and the last company I was with, besides performing in theatres, also travelled to schools to perform, so I guess you could say that I came full circle with my career. My desire at this time in my life was to become either a dance teacher or choreographer.
In 1993 I disclosed my sexuality to my family doctor at the same time that I was being tested for HIV. Upon hearing the words HIV+ for the first time, my world fell apart, and I was overwhelmed with shame when he informed me that he could no longer treat me as his patient. I was very confused and emotional. I had been living my life with pride, as my parents taught me to do but the gay community was taking the brunt of this disease and the stigma that came with it.
With this diagnosis I was retiring from my career of 17 years in classical dance, as well as settling into a relationship with a man that lasted for 10 years. This former partner and I are still living together as roommates since meeting each other in 1990. The way I look at it, my life-long relationship now living with HIV, reminded of it daily with having to take medication, and the overall impact my diagnosis has had on my life over the years.
Involvement with ACCKWA for me has allowed me to become connected again with my life. I’ve been part of the agency's Speaker’s Bureau for some time, and have replenished much of my own personality that I used to have prior to my diagnosis, simply because they’ve given me an outlet to express myself openly and shamelessly.
In 2007, my immune system was so compromised after choosing to take a drug holiday, and I thought my body was becoming resistant to HIV medications. I was gradually losing weight and I began collapsing, weighing only 90 lbs. I was admitted to intensive care at University Hospital in London and it was discovered that I came into contact with a parasite that nearly killed me. I spent the next two months in Kitchener at Freeport Hospital. I was never so scared in my life as the day I was admitted to Freeport Hospital. To me this was where you came to die, and I lay in my bed and cried more than ever before. I figured it was only a matter of time until I passed away because of this.
However, I’m certain that my athletic background helped me to battle this horrible crisis. Once the antibiotics did their part, I had to strengthen and rebuild muscles, and this was extremely difficult. To this day I still suffer from neuropathy in both feet. I had to learn to walk, talk and write again, as the parasite paralyzed one side of my body which even affected my speech for a period of time.
My former partner and current roommate, as I mentioned, has been an ongoing support in my life. A few years after I broke up our relationship, I met another gentleman at an AIDS Conference in Toronto and we became partners. We had something in common - HIV/AIDS. To make a long story short, during our health battles, our relationship became one of long-distance phone calls every night, as he lived near Kingston. Unfortunately, he passed away a few years ago, and my own health did not allow me to attend his funeral. However, my roommate had became good friends with him and did attend his funeral in my stay.
In 2010, a production of Rent came to Waterloo Region. Presenting my story to the young performers was added motivation for their performance that evening, having face to face contact with someone living with HIV/AIDS since this play is based on someone dying of AIDS.
In 2011, I was invited to Eastwood Collegiate to speak in front of 450 students, and yes I was scared. It was not until I arrived through the front doors that I realized it was an ARTS School. A ton of bricks was lifted off my shoulders at that moment, as I was proud to be walking into a school which was in line with what inspired my own former inspirations in life. After I spoke, a young gentleman came up to me in tears, and indicated his uncle was HIV+ and he now felt better informed to have open conversations with his uncle regarding his diagnosis. He had no one in his life that he felt he could turn to so that he could learn more about this disease, and he was so grateful for having us come to his school.
Another positive experience for me in 2011 was as a cast member in a play the “Laramie Project – 10 years Later". For those of you who do not know, this script was written by members of the Tectonic Theatre group in respect to the Matthew Shepard Story. Matthew was a 21 year-old gay student of Wyoming University who was viciously beaten to death because he was gay. This production was also performed to help bring awareness about students being bullied in society at large. This topic of course hits home for me, because I chose to be a classical ballet dancer from the age of 10, which begged the assumption that I must be gay. I had students threaten to kill me because of all this. Looking back upon it now, I am sure it was a way for them to have their fun, but of course it had an impact on me. I did win them over at our grade 8 graduation, as the teachers asked if I would perform a dance number. With much hesitation I agreed. Following the performance all the students signed a program apologizing for their behaviour over the years, and I have this program to this day.
I have been involved with the Volunteer Action Centre and their Day of Caring to elaborate on the importance of volunteering within your own community.
I’ve also been sharing my story through blogging on PositiveLite.com, a site for people living with HIV/AIDS to express their thoughts.
I feel there will always be some stigma attached to HIV. As I look at it, stigma is a way for some to deal with unwanted emotions. There are many people in society that are homophobic, it’s human nature for some, and I suppose some will never be able to get past this state. I’d like to say that I’m proud to be gay and I’ve been living a life of fulfillment. There is always good that comes out of bad and I’ve had many, many opportunities to continue fulfilling my aspirations in life. But I still would not like to see anyone go through what I have because of HIV/AIDS.
In closing, I would like to add that my own story is one of many, and I sincerely appreciate you having me here today, to express the impact this disease can have on a person. The quote I like to use is “to think of the impact HIV/AIDS has had in the world at large, and multiply that by 10" - this is basically how impacted a person can feel from having this disease. Again, this is not something to take lightly, and I only wish you all stay safe and protected.