— Shaun Proulx (@ShaunProulx) December 1, 2014
With another World AIDS Day capturing global attention, I remember the Friday morning last summer when I told Matt Galloway live on CBC radio I am HIV-positive.
A nightmare. As I went to disclose – aloud for the first time publicly – my mouth dried, my mind blanked, my throat seized. It was stage fright so acute I literally forced myself not to flee, live radio be damned.
I don’t do stage fright. I speak live in front of thousands of people, and I host a weekly talk show heard across North America. And I’m a writer. Words are my friend.
Not that day. I suppose from staying silent for eight years about my status, my words didn’t come when I needed them most.
Testing positive in 2005, I decided not to tell anyone but sexual partners and close friends who had also tested positive. I wanted to remain Shaun, not a diagnosis, especially as someone with a public career.
Now that’s out of the way, my words flow easily again on the matter, and I’d like us all to consider together the idea of using our words to tell a better story about this dis-ease than the one most still keep telling.
Because at 46 I’m old enough to have witnessed the true apex of the horrific ravages of AIDS. Boys you danced with one weekend to Madonna at Chaps or Colby’s – defunct Toronto gay bars – became ill, never to return ever again under the disco ball.
Or, the time that shook us like we were rag dolls: Don, voguing with us Saturday, dead by the following Friday.
So since those early days, like thousands have done and do, I have put much energy into helping. Walked in the AIDS Walk for years, co-produced a TV documentary, wrote countless features, created a still-going annual Christmas food drive for people impoverished by the dis-ease, biked from Toronto to Montreal three times to fundraise, hosted and sponsored countless events.
Outing myself on the CBC last year was me also trying to help, in a different way than I ever had before. Finding myself the Chairperson of the 25th Anniversary of Toronto’s Scotiabank AIDS Walk For Life that summer, I became galled to realize how many people still judge themselves and others – using stories about HIV and AIDS that are now over a quarter-century old as their justification.
I was so galled because the story that I’ve been telling myself about my HIV has negated such nonsense. My story, based in this century, goes like this: I am the happiest guy I know. I lead a life beyond my fondest dreams. I am successful, enjoy a wonderful marriage and am in great health.
I can count on one hand the number of times I have been unwell – mere colds, mostly – since my diagnosis. I spend more time flossing than I do on my HIV care. My CD4 numbers (used to monitor one’s immune system and the effectiveness of drug treatment) are consistently as good as that of an HIV-negative person. I have, blessed like many others, achieved “undetectable” status. So few copies of the virus are present in my blood that today’s monitoring tests are unable to detect them; some science says the risk of my infecting another person is reduced by 96%.
I’m not “cured”. But if chemo zaps the cancer into remission, does the previously cancer-ridden patient continue going around telling the story about their cancer?
Actually, some would, wouldn’t they, and that’s my point. You get to choose the story you tell on any subject, and when it comes to the subject of HIV the story too many people still tell is Mother Goose old.
But I am fortunate be amongst the generation of gay men who could actually see old age in this country. That’s not just a story worth telling, but a story worth celebrating.
And, as far as anyone’s judgment towards me having acquired HIV, I don’t even consider it. As I told Matt Galloway on the radio (once I got over the shock of my self-inflicted TMI), I became infected with HIV because I’m human, period. HIV is something that can happen to human beings doing a human act. I had unprotected sex, something every adult I know has done. That I acquired a virus in the doing doesn’t make me – or anyone else who has acquired it or who will – wrong, dirty, or worthy of any of the stigma that still goes on to this day.
It makes me human – the end.
That’s the story I choose to tell. The volume of HIV, blasting so m-f-ing high since I was a freaked-out-rural-Ontario-It-Gets-Better-1980’s teenager, is now set to low. HIV is but a speckle in the sum total of all that I am.
I have the world wrapped around my finger – something to aspire to, never judge.
And that is not exclusively my story; it’s the story many have of us have to tell. It is time more told it. Most of us have wanted, hoped and prayed for an end to this dis-ease for decades, and while I am well too aware of the dreadful plights of less fortunate people as close by as the United States and as far away as Africa – there is much work still to be done – I also am acutely aware that here in Canada, like with our same-sex marriage and human rights triumphs, we are, like it or not, global leaders.
As leaders (and in a time of Generation PrEP – just imagine such a thing!) we owe it to those who struggle more than we do now to stop negating how far we’ve come. We must be the light that shines for those still making their way. What does their future look like?
As leaders let’s be their beacons.
I wonder if (play with me here) as societal leaders, we might contemplate an HIV/AIDS divorce in our vernacular, too, a permanent separation. They are two distinctive states of health. I personally know no one with AIDS and while I still feel loyal and supportive to anyone who does have AIDS, it is unfair to lump people diagnosed HIV-positive in the same pool. It keeps that damned Regan-era stigma alive, the one that galled me so much I felt the need to sit in Matt Galloway’s guest chair in the first place, just to try and bust through it a bit by adding my own face and name.
Changing up the old HIV/AIDS story in any way isn’t an idea that will be warmly held by all. Many people don’t want to let go of the past, one that saw millions die tragically; I get it. Many people with dis-ease or illness hold tight to it as identity; I don’t get it. Many people make money off of dis-ease; I have too.
But that’s okay. As someone who leads a life by his own design, I must honour this World AIDS Day by saying that HIV plays next to no part in my now reality. I must constantly appreciate how blessed I am that this is so, and I must give HIV the little attention – in my life – it now deserves, while still working to ensure others can enjoy what I am so fortunate to.
In the end, if I am so blessed to be one example of the closest thing we’ve seen in over three decades to what a survivor looks like, is it not my responsibility to loudly tell that story now, those who suffered and passed before me – I feel you, Don – cheering me on?
How dare I not, now that my words are back?
Image: Shaun Proulx Media
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- Related: World AIDS Day 2013 – Watch This Special Episode of The Shaun Proulx Show
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