This Is Not An Article About Being Positive
JOE TELLS ME
The results came in
I am positive
in a text message
with a smiley face
- H. Melt
Six months ago I was diagnosed as HIV+. For as long as I can remember I always wanted to live a life worthy of a novel. Then one day I woke up and it just started happening. Upon notification of this an internal shift occurred. I began to observe my body as a complicated vessel. A vessel that can inform, challenge and reinvent identity. My identity as a queer kid from Chicago. My identity as a documentarian of other queer kids in Chicago. My identity as a partner, friend, brother, uncle, son and lover became something different. Taking a cue from my queer community I have learned to celebrate how this difference allows me an additional and valuable perspective on daily life, the work I do and the people I engage with. The most natural method of processing this change was to write about it. I began to document myself. This form of expression offered a sense of relief. It was a new world within myself that I had never known how to navigate and now I held this brilliantly alien compass in my hand.
Perhaps it was a coping mechanism, a way to avoid the routine of mourning a loss or a method of connecting during a time of isolation. Either way I decided to announce this life change to my community. To be clear, we are talking about more than just immediate family and inner social circles. The message I sent, affectionately titled my HIVmail, was delivered to over 100 different people I knew, worked with, slept with, cried with, danced and laughed with.
I have not been positive for a very long time, but in that time and before my diagnosis I rarely encountered written works by young positive queers that resonated with my experiences. So much of the writing I encountered was directed at a mass audience and embedded with themes of assimilation, normalization, pacification and/or desexualization to make it easier for other people to understand. This may have also been partial motivation for my reaching out in written form so quickly to so many members of my community. I felt it was important for a young queer voice living with chronic illness to be heard without restriction. However, I am not interested in becoming ‘the voice’ and realize that many others have written or expressed their experience that I have never seen and may never know. I do not have interest in being a figure of empowerment. My agenda is not to wage a campaign against stigmatization or fear and ignorance. I write for myself. To explore my experience and to share the knowledge I gain with those closest to me as I go along. I am privileged to have resources available to me that not only allow me to express this voice to my community, to my family, but also with an unsuspecting public.
During my first year pursuing a graduate degree in social work in Chicago I had worked with youth-based LGBTQIA and Gender Non-Conforming populations experiencing homelessness at agencies such as The Night Ministry and Broadway Youth Center, where my experience and knowledge of what it means to live as positive was vastly expanded. I was reasonably educated on the reality of HIV today, the advancements of medical science and the continued obstacles of stigma. I worked regularly with people who face a myriad of immense systematic obstacles to receive access to resources, including housing, health care and employment options. Obstacles my privileges as a white working class cis-male from the suburbs of Chicago could not understand or relate to. What I remember the most about this young group of people, who are also members of my community, is the way they danced. Everyday I watched them light the room on fire with their turns and twists, dropping to the floor, bending their bodies as complex illustrations celebrating one another. This is community. They celebrate, survive and thrive. I learned from this.
My community is also reasonably educated on the reality of HIV today. I remembered this as I prepared nervously to hit send to an email with the subject line: The Majesty of the Future, my dramatic flare was a trait that did not change. I shared fairly explicitly how I found out, how I felt, some facts about how so much has changed, where and how I would be receiving care and that I was always available to have a conversation or answer questions as they came up. I wrote about some of my future creative goals and how so much of that was inspired and could only continue with the same radical support I had received from these folk over the last few years. The responses varied, from intimate offers of support to Hallmark condolence card language. Some people brought me food. Some people carried on the same as before. Some people developed distance. Some people got closer. Mostly I learned just how complex people are. Often they just want to understand, feel safe and convey sympathy.
The most immediate conversation of course was that with my partner who had been there when I received my results, held me on the street afterward and who never looked at me differently. We had many long conversations about what this would mean for our relationship. I learned the term serodiscordant, a relationship where one person is positive and the other negative. I learned new forms of safety and companionship. I learned a more intentional and critical level of discussing sexual practices such as the hyper stigmatization around “barebacking” and the option of post exposure prophylaxis (PEP). The option of both post and AND pre-exposure prophylaxis. Pre-exposure prophylaxis is an HIV prevention method in which people who do not have HIV take a daily pill to reduce their risk of becoming infected.
We are young slutty guys in Chicago working our art hustle everyday and we love to share that love, that consent-based sex with the many cute people we meet along the way. I still hug and get hugged. I still kiss and get kissed. My partner still fucks me like an animal. We discuss with our partners the chosen parameters and precautions of playing with someone positive. We share stories about what makes us comfortable and what makes us nervous. We learn to balance different boundary lines and face accountability. We laugh. We hold each other. We cum. We do this together.
What I have come to learn these first few months after being diagnosed as HIV+ is as follows:
People do not know that it is probably inappropriate to ask how I contracted the virus. Tact is an invaluable trait amongst the public. Though I have considered drawing diagrams for some.
Having a chronic illness does not mean you are any more or less functional than before you were diagnosed. People make varying choices for themselves regarding their health and how to approach it and they should have that right.
A lot of positive people take one pill a day. I take one pill a day.
I know there is much more for me to learn and my experience is new. Learning what it means to take a daily medication and balance the side effects with my lifestyle. Learning what boxes I will be expected to check off, pre-existing conditions, passports and visas, disclosures by force of law. I will be instructed on how to apply for benefits as a low-income individual so my health care, along with 15,000 other people across the country due to sequestration, will not be cut off. Plenty more conversations will be had and I welcome the opportunity to engage in healthy dialogue. I live according to the fact that the world is different, I am different and it is the adaptation, the ability to evolve and shift that will allow me to thrive. Now I just need to learn how to dance better.
By: Joseph Varisco