On transformative experiences
We are accustomed to raw emotion, to tears even, in HIV workshop settings when the conversation turns to topics like grief and loss. That’s our history. But seldom do we see tears of joy or maybe something deeper, something hard to explain but clearly good, something akin to elation.
That happened in Gananoque, Ontario last week. “There is nothing better than being there when people living with HIV learn about #UequalsU for the first time” said the Prevention Access Campaign’s Bruce Richman, my co-presenter. He had taken to Facebook after delivering a barn-storming performance, full of raw passion and emotion, at Opening Doors, a regional conference for people living with HIV in Eastern Ontario.
I’ve worked with Bruce before – last month we delivered workshops in Toronto and then Montreal. The smaller venue, this time featuring an audience made up entirely of people living with HIV, seemed to change up the dynamic, even more so when a show of hands revealed that some in the room were unaware that undetectable does indeed equal untransmittable. Interesting!
So we go to work on bringing U=U to life to our Gananoque, Ontario audience. I open, battling an uncooperative microphone whose cutting in and out throws me off. But it's OK. Then I give Bruce his intro and he’s off like a racehorse. He is elated to share the news about U=U but also fired up to challenge those who withhold it from people living with HIV - and it shows. He’s also clearly excited to be talking to real people living with HIV and that shows too. He talks about the science, the challenges and the campaign's successes. It’s inspiring to watch.
Even the PowerPoint he uses is inspiring. It’s a fast-paced, easy on the eyes slide presentation whose climax packs a wallop – beautifully supportive words from people around the world and, even more powerful, U=U messaging in a slew of languages from the campaign’s global supporters. There is something about seeing U=U in Italian or Macedonian that gets to me. “People living with HIV did this together” it declares. It’s very moving.
Afterwards I’m in good form again but I choke up while telling the audience about the difficult and emotional ride we have had while working on the campaign. I told them how much it meant to us when CATIE signed on. It’s hard. Close to tears, I have to pause for a good fifteen seconds to compose myself. I succeed, barely. If I’ve felt this close to losing it before an audience of my peers before, I can’t remember it.
The audience is engaged though throughout, bursting to ask questions, offer comments. When we have finished presenting, some offer testimonials about what learning about U=U felt like.
Dan, a fifty-ish long-haired man in the third row, had not known until then that he was unable to transmit the virus to others. He was crying openly when he stood up to talk. I asked him afterwards why? “Basically when I heard it, it didn’t sink in” he said. “So I walked outside, had a cigarette, and I processed it and it sunk in - and I started to really get angry. I was angry about how different things would have been if I had known that years ago. When I put my hand up and started talking I was trying to relate that I was angry at the system for doing that to me. But at that moment I couldn’t articulate. All I could say was that I felt betrayed. The breakdown was simply an overwhelming emotion that came over me that I couldn’t control. I had felt that I would always be a risk, that the risk was going to be a permanent thing with me. It feels great that I know I’m not a risk now. From this day forward I know that I have a future.”
Brigitte, an attractive senior siting in the front row, also cried as she told her story. Afterwards I cornered her outside. It was cold and wet but she was happy to chat. I asked her about her emotional response to the news that she can’t transmit the virus. It’s clearly rooted in her own experience. “This means a lot to me.” she says. “Back in 1984, I would be dating men and the first thing they would ask was “are you clean?” And I’m going “yes I’m clean, I take showers””
So why the tears? “I’m not a bad person. There is no way I would infect anybody. We have been together (with my partner) for 20 years. Now I can stop using condoms! It been like “Can I? No I can’t” Now I have to go home and tell him all that (about U=U)”.
Others were equally forthcoming. Clearly our presentation had made an impact. But here is something I learned in Gananoque: presenters are not immune to being profoundly affected by their audience. It works both ways.
Next day the experience was still with me. Bruce too. ”Yesterday was so powerful” he messaged me. “I wish I could live in that moment.”
I messaged him back. “To be in that room where people are LEARNING they are rid of fear of transmission was pretty mind blowing”
I went on “I know this is why we do this. This is our purpose. To change lives."
Looking back, I view that workshop as one of the most profound and transformative experiences of my almost 25 years working within the HIV movement.
Thank you, Gananoque, Ontario. Thank you to the Opening Doors Committee for inviting us and thank you to an audience of truly astonishing people living with HIV, teachers every one of them..