It never ceases to amaze me the things that will trigger a response to past experiences, even when we think they have been worked through and thought to be buried and packed away neatly into our brains historical archives never to bother us again.
For some it can be the smell of apples and cinnamon taking us back to Grandma’s kitchen, for others it is a song that transports us back to the very moment we first heard it. The most recent trigger for me was a film that ignited long buried emotions of the loss, anger, frustration, isolation, loneliness and despair that I thought I dealt with in the 90’s back when modern HIV treatments changed everything in my world.
The film is called “Dallas Buyers Club” and it transported me back in time to when I was first diagnosed HIV positive with a prognosis of 3-5 years tops. The opening scene of this film was my lived reality. I remember being told to get my affairs in order and say my goodbyes to friends, family or anyone else important in my life. To this day I cannot remember the drive home after speaking with my doctor.
It was not until after the film was over as I began walking up the aisle of the theatre that I began to feel the overwhelming rush of emotions running wild through my head. I had been ok throughout the entire film even though some moments of unease were experienced as it reflected the “reality” of the times. It was very uncomfortable experiencing so much emotion especially when I thought I had worked through most of my survivor guilt and other emotions from the past.
I quickly moved out of the theatre and heard a lady at the entrance ask “what did you think about the film?” to which I quickly replied “disturbing” and rushed past friends and colleague also at the film as my emotions gathered momentum towards melt down. I wanted and needed to be in a safer place before this happened.
I went home with my partner, asking him to drive because my emotions were all over the map and it was taking everything in my power not to fall apart. It was not until I got home and sat on the back deck that I was able to let all the emotions run free as I cried, cried and cried some more. I cried for friends lost, I cried remembering the cruelty of the people around me at that time and I cried remembering the way I was judged and dismissed by people I had trusted to be there no matter what. I just cried. I gathered myself up after some time alone and went back inside; emotions checked, addressed and repacked…for now anyway.
There were many times while watching the film that I saw myself or the faces of long past friends appear before me. The most jarring personal moments in the film for me occurred when the main character was alone in his car thinking about suicide and when he was alone looking at his reflection in the mirror. These scenes reminded me of my worst days wanting it all to end and not being able to recognize my emaciated reflection in the mirror as I struggled alone out of the eyes of my partner, friends and family.
I managed to get through this film induced emotional roller coaster with skills I have learned from other HIV positive people over the years, by talking with my partner and with the people who work in HIV supports and services. I am grateful they are here now as there was a time not so long ago when they were not. It also helped to know these same emotional feelings are what incited me to become an activist, advocate, treatment educator, and a support for other people with HIV and to address and change the perceptions and misinformation that exist in the community. I would not be the person I am today if not for these experiences from what feels like a lifetime ago.
I felt the need to write and share this because I sense there are other people like myself who have been HIV positive a very long time and may also experience some post-traumatic stress related emotions after watching this film. It tripped the painful memories of how other gay men disconnected from HIV positive friends not wanting to be “marked” HIV positive by association, front line health care professionals coming into hospital rooms in full hazmat gear and leaving people in their own messes out of fear of transmission. I remember no medication options and the poisonous side effects of early AZT and the response from society that we deserved it (HIV) for being who we are and doing what we all do as human beings.
We long term survivors living with HIV have witnessed and survived the multiple funerals of our friends and lovers, the days with no medications, the clinical trials, the hate and distaste from society including our own GLBTQ community, the disowning by our family, friends and religions that were supposed to be there for us but often failed miserably. Times may have changed in treatment and long term living with HIV infection however the stigma and discrimination experienced by people living with HIV remains well rooted in myth and falsehoods about who is at risk for HIV infection.
Let’s be clear here, everyone engaging in unprotected sexual interactions with another person is at risk for HIV and other STIs transmission/infection and their sexual orientation, gender, ethnicity have no bearing on that risk; however social determinants such as poor health services for gay men, poverty levels or being part of a marginalized population can increase the “level” of risk for some particular groups. The reality is everyone is at risk, period.
Thirty years later much has changed with regards to clinical treatments and options for people living with HIV, however the most important change; that being the elimination of stigma attached to HIV has yet to occur. Sadly the film reminded me of this cruel reality in a way I was not anticipating, yet reminded me of how far we have managed to come in a very short period of time for a better outcome when living HIV positive today.
Living with HIV for 25 years and gratefully still counting.