At the end of April, I was in my car for a two-hour (ish) drive home. It was a quiet ride – just me with my thoughts (and there were many). I contemplate often about many things (probably too many things too often), but this was different… different in ways that I realize I am still processing. The experience I was driving home from moved me. It inspired me. And, it made me wonder.
I didn’t realize it at the time (at least, not consciously), but it struck me as I made my way on country roads that stretched homeward, the farms and fields I passed my only distractions: I had just experienced my first HIV-related event as a person living with HIV.
Sure, I’ve attended hundreds of HIV-related meetings and gatherings over the past two-and-a-half decades, but always ‘wearing a hat’ that wasn’t really my own. This time, I was there – wearing my own hat – and I felt things that I had only witnessed others feel before. I felt connected with community, but not quite sure about how to be part of it. I felt fortunate for sharing space and time with a vibrant group of my HIV-positive peers, and I felt lucky to be with them, living still.
But I also questioned whether I could or should identify as a peer with or to others – do I really know how to do that? I felt survivor guilt in a way I hadn’t felt before, and I felt some contrition for what I have in life despite its challenges… particularly when too many live and die with far less, and when what I think of as life’s challenges pale in comparison to what others do or will likely have to deal with every single day.
A series of uncomfortable circumstances over the past several months and my job loss in January sent me into a deeply personal and terrifying mental health tailspin – a personal crisis, really. I felt lost and isolated. I felt inferior and of little value – at home and everywhere else. I felt disconnected, maybe disenfranchised – a pariah. And I felt defeated in every sense of the word.
But I also felt strangely liberated and without fear of reprisals from a boss who didn’t get it or seem to care I wrapped myself in the closeness and comfort of the Canadian Positive People Network: the CPPN.
I wanted a meaningful and relevant connection to community and I knew the CPPN would help me find it; and I wanted to contribute to community with and through the CPPN and its expanding membership. The CPPN invited me to join two of its Board members (two wonderful people I feel so privileged to know and to be connected to… Gord Asmus and Christian Hui) at the 24th Eastern Ontario Opening Doors conference in Gananoqué.
I joined Gord and Christian at the podium to present and promote the CPPN to conference participants – to celebrate its early accomplishments, and to think interactively and out loud about its future with a group of our HIV-positive peers. We were well-prepared with really good notes and speaking points, with slides as visual aids, with pride in the CPPN, and with hope for this independent national network’s future with, by and on behalf of people living with HIV and HIV co-infections from Eastern Ontario and from across the country.
Going in, I was sure that our time at the mic would convey confidence such that the pride and hope we felt would be contagious. It was… but not for everyone, and not quickly.
Some folks arrived that afternoon from a funeral – yes, people ARE still dying – and others arrived from close by or from far away. But, I thought, everyone arrived with energetic resolve and with an open mind. I also thought that everyone arrived already loving the CPPN or, at least, the notion of it. There was respect and safety in the space that made honest interactions easy.
It didn’t take long for me to see that we were not all on the same page. Some of us were already CPPN members and thrilled to be part of it; some of us were intrigued, but not quite ready yet to connect with the Network officially; and some of us were suspicious of the CPPN’s genesis, its current motivation and/or its intentions.
"I felt connected with community, but not quite sure about how to be part of it. I felt fortunate for sharing space and time with a vibrant group of my HIV-positive peers, and I felt lucky to be with them, living still. "
The praise some shared for the CPPN was genuine, and it was welcomed. The skepticism was less evident, but real and present, and (it seemed to me) born of misinformation, misunderstanding, or (probably most often) of concerns around community in-fighting and/or competition for too-limited resources.
Some hard questions were asked of us – really hard, but very fair questions. Why do we need the CPPN now? What’s changed that makes the CPPN more relevant today than it (or something like it) was 20 or 30 years ago? How will the CPPN protect itself from being swallowed by politics (big and little “P”) or bureaucratic bullying? How will the CPPN exist and sustain itself financially – where will funding come from and with what strings? How will the CPPN guarantee that it won’t be guilty of “eating its own” to get ahead in what has been conditioned to be a very competitive community environment?
And so it went… really tough questions from an incredibly intuitive group of dedicated people and committed advocates.
We responded to each, but I don’t think we answered every question – I hope we didn’t. I’d hate to think that people might believe that the CPPN presumes to have the answers without a broad and diverse membership of people whose minds should and will come together to deliberate and to strategize.
I should be very clear here… this is not an official a report-back for or on behalf of the CPPN, so you won’t find answers here either.
I’m just piecing together and processing the whole experience, from my personal frame-of-mind going in, to sharing the podium with Gord and Christian, to welcoming the refreshing thoughts and open sharing of others and their lived experiences to help revisit my own perspectives.
Nonetheless, the questions, I humbly submit, are relevant outside of Eastern Ontario too and may, in fact, resonate more strongly in other parts of the country. If nothing else – for now – the questions, I hope, stimulate some conversations.
I guess what I am still processing now is a conscious awareness that this conference experience, and what happens after it, opened my eyes and my heart to a new and incredibly rich perspective on what life experience represents – how it shapes who I am, but doesn’t necessarily define me (or shouldn’t).
I took self-pity out of my life’s equation, and I stepped out of the darkness of my despair. I realized that no matter how different we are as individuals – how much more or less we have; or what circumstances come, go, or stick around – together, we are community and we should celebrate who and what we are more often.
We shouldn’t “eat our own” and we need to be unshakably confident in what we are capable of. We can and should care for and take care of one another unconditionally.
I realized that if I – if we – truly embrace our life experiences and our wonderfully diverse perspectives, doors, indeed, will open!
About the author: Jeff Potts was and remains motivated by his own HIV infection twenty-five years ago. In his life and his career, Jeff is inspired by Helen Keller and shares this goal: "I long to accomplish great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker."
Jeff was a national programs consultant at the Canadian AIDS Society from November 2014 until January 2016. Before that, he was a long-time public servant. His last position was with the Public Health Agency of Canada as the (national) manager of the Hepatitis C Prevention, Support and Research Program. Before that, he held health portfolio positions at Health Canada and at Correctional Service Canada; and before that (way back), he was one of the earliest representatives of CATIE. Over the years, Jeff has spoken about and/or represented public health policy and programs on countless occasions across Canada, and at international meetings in more than twelve countries around the world. Jeff is a proud and active member of the Canadian Positive People Network (the CPPN) where he shares unyielding resolve to improve and protect the health, quality of life and social condition of people living with HIV and HIV co-infections in Canada - and everywhere!