Battle scars: What's it like to live with HIV long-term?
For long-term HIV survivor Brenton Geyer, being transparent about his status is an act of defiance.
A lot of people I know compartmentalise their lives so as to live life via a series of silos. This is something I have never been able, nor sought to do. I’ve mostly lived my life like an open book, whereby as the pages are turned my story is revealed without secrecy, without shame and often without control. There is no plot, only blind leaps toward an uncertain end. Nor are there any chapters, for this would assume some sort of life plan. I’d like to think that at whatever page you open my book, there’d be something revealing, something provoking or something shocking. This is how I tell the story of my life. No compartments, no barriers, no hesitation.
HIV came into my life accompanied by some trepidation, although not unexpectedly, much the same as one might face the onset of greying hair. I’d always felt some sort of inevitability. HIV has become as much part of the story of my life as other predictable hurdles I seem to jump without my world caving in, such as stressing over my debts and why I spend so much on catering to my vices, or processing the recent death of my father, or worrying who’s going to employ me for my next project.
My prognosis is what I think would be fairly typical for a lot of gay men who lived fast through the eighties and nineties. Chemically fueled reckless behavior buried a lot of my insecurities to the extent that the resultant fearlessness in me drove a lot of my decisions around the way I lived my life. And thank goodness for that! Underneath all of it was a shy, unsure and unassured boy who, without amour adopted as defense, saw a future made up entirely of beige. I’d dress up to muck up. I’d drink to dance and I’d fuck to belong. My diagnosis came at a point where I’d already been hard-wired with resilience. I recall my seroconversion with exaltation, a page in my book that is global, glamourous and red hot. It even has a soundtrack. It was an experience far beyond that of the shy, unsure and unassured boy whom I’d left behind.
Disclosure is something a lot of people living with HIV fear and, of course, rightly so. There are people out there who would have us kicked to death for who we are. There are those who we are meant to regard as community leaders, protectors and role models who would shame us and have us believe that we are unclean, toxic and undeserving of love and respect. It’s discrimination and stigma that sets HIV apart from other treatable chronic diseases. It’s this difference that is now compromising the wellbeing of those of us who are living with HIV. It’s not the fear of death. It’s not the debilitating effects of our medicines. It’s not the lack of education – it’s the lack of listening. It’s the lack of learning. It’s the lack of loving. The community needs to be prepared to access the education and to listen and to learn, but it starts with us. It starts with you. We need to own this and keep owning it. While we don’t own it, the bashers, the bigots and the haters own us.
So as I’m entering my mid-fifties, what does it mean for me to be living with HIV? It means I’ve outlived a lot of my comrades. It means I’m likely to outlive many more of them. It means that my life-experience is rare and valuable. I means that I am here to have a voice and to speak up against discrimination, stigma and fear. It certainly doesn’t mean I’m going to be less reckless, less fearless or less resilient. On the contrary, I’m out to do battle, scarred already as I may be. I wear my battle scars as badges of honour. These are scars that have fought a good battle. A battle to live life as who I am, with neither compromise nor apology. Not shying away from HIV is a part of all of this.
Being transparent about my HIV is an act of defiance. It's saying to those agitators who would shame me, “You can't touch me. I own this,” and this is the best any of us as individuals can do to face our poz futures with dignity, self-assurance and resilience.