On December 2012 I went to get a free HIV test and was diagnosed HIV+.
I had no health insurance. I was an unemployed artist who, just a few days before, had applied for food stamps. I was paralyzed. I needed to move, but could not find out how to do so for myself.
So I created someone who could. Someone who, in the following months, would take this new status and transform it into a tool. I would say the words, "My name is Joe Varisco and I am HIV+" at shows, on panels, in articles, as a public face of "HIV today."
Photo by Ji Yang.
I would say this to rooms full of strangers until it became the same as reporting my height, where I was born, what I studied in school. It was a fact. The more I spoke the words, the less I understood what they meant. I was lost. My mind could not find space to understand.
When I am seeking to understand a new experience, I usually turn to my community and ask them to share knowledge of their own, and oftentimes they generously tell me through dance, poetry, music, film.
Illness is a powerful queer identifier. It others, it separates, it creates barriers of understanding, stirs deeply embedded stigma and privilege. Illness confronts us with that irrefutable notion that we are all temporary pieces of conscious matter. However, it also reminds us of our resilience, our capacity for political resistance, and the strength we find in healing. When we wrestle with the truth of our own illness we begin to discover the threads of humanity that no barrier can withstand.
There are a lot of important reasons why I do this work: to spread information, to create conversation, to increase visibility of the underrepresented and the underserved, to change and complicate the narrative. But mostly, more than anything else, I continue this work because I want to keep listening to my community share their stories so I might get a little closer to my own.
Recently I wondered how different my experience would have been if I had their voices to listen to after my diagnosis. I asked a few of these generous folk if they could write letters to themselves before they were diagnosed with HIV or experienced a change in their body's mobility while living with the challenge of chronic illness.
I asked them to speak to their younger selves and remember the moments of resilience, resistance, and healing that has changed their life--many times, and most surprisingly, for the better.
Joseph R. Varisco began a career as an HIV+ social justice advocate turned independent producer and developer of LGBTQIA creative works through programs such as QUEER, ILL + OKAY, the Chicago Queer Arts Mentorship Program, Salonathon, and most recently as program coordinator for the nationally touring exhibit Art AIDS America. @jrvmajesty.
QUEER, ILL + OKAY's is an annual multidisciplinary performance series featuring LGBTQ artists living with HIV and other chronic illnesses. Friday and Saturday December 9, 10 and 16, 17 at Oracle Theatre (1802 W. Berenice, Chicago, IL). Admission is FREE in Public Access Theatre at www.publicaccesstheatre.org.
Educator and multi-disciplinary performance artist, author, hip hop recording artist, poet, activist, youth advocate. Photo by Justin L. Martin II.
I know you're anxious about your doctor's visit. Nearly 18 years since your diagnosis, there's the possibility that this fifth HIV drug cocktail you've been on, since the toxic lifesaver Crixivan, will be met with resistance. You've survived other daunting moments. That moment sitting across from the counselor in Oakland to hear the words "You have AIDS" seems part of a not-so-distant past. It forced things that may have never happened: the break from PhD studies to pursue the drum of your heartbeat, a pioneering queer rap collective that forever changed the boundaries of hip-hop music, your first book extending the brave legacy of writers like Essex or Anzaldua, or the blessed burden of being a bold enough POZ poster child to inspire hundreds of youth seeking a more immediate reference for thriving than Magic Johnson.
Disclosure is still hard. The anxiety about health sometimes pales in comparison to being shamed for living with HIV. As a queer man, many feel you "deserve" the disease. This is hard to manage when it's other gay black men who shun or whisper about what they regard as sickness. There's lots of education still to do. You give a lot--and not for the profits your creative work has never seen. Whatever happens with this new cocktail, hold onto hope--a great love awaits, you've got a novel to finish, and there are countless people who will fight for you. When it seems cloudy, remember your sunshine.
Multidisciplinary artist not limited by medium. (If I can dream it I can find a way to create it.) Photo by Silly.
It may be hard to believe but you will come to LOVE AIDS. You really are beautiful and fearless. You only need to remember that you are a magical warrior and you will find strength in transparency even though it is scary sometimes. You are NOT a victim. Your pleasure is your power. It is in sharing defiance that hope resides. Embrace HIV, forgive the virus, forgive your body for the challenges and the lessons it has provided you with, forgive stigma and fear. Your soul fire is going to be invigorated once you realize you can transmute the negative energy around HIV into something light hearted, sexy, and cute. Be proud, be in awe of how much you've transformed since six CD4 cells and three months to live.
Your Human Illumination Virus will take you mind, body, and soul! Brace yourself for a cosmic orgasm. Soon you will be making art that welcomes and embraces the virus as a part of you and that is very powerful work. Love your ass. Be loud and graceful. Remember your inner child. Banish shame, banish stigma, banish ignorance. When you feel like you won't ever know intimacy or love or sex please know that I am hugging you and use those emotions to fuel the immense creative power inside of you. You have loved and been loved a million times already, in this life and the next. You will get your scent back, don't worry. Say it with me, "Hi, Virus: We are not alone, three letters don't define us, and stigma will not blind us." #poz4pleasure
Poet, performer, cultural strategist, snack eater galore. Photo by Jess X. Chen.
Dear body, dear thing, dear pain, dearest laughter and wince,
you never asked for this. that's the truth, but like all your people, your cane is a drum song and you're no stranger to bullshit. what stories does your blood tell? we could say, howl, say part limping tree and part starlight? we could say that you're a survivor of systems that stretch you out broader than any creature of wingspan can imagine. nevermind, the destruction, the parched throat, the pill cocktails, the sorry, there are stairs. adversity is a jigsaw of stethoscopes, racism, and whatever people think a real lady should be. you are slow, babyboi. you are okay. you are worthwhile of expanse. let them all fucking wait; you are breathing. remember, the best of stuff takes time to simmer, ruminate, to sit in the shape of things. your allies: bed, wakeful sunrise, peanut butter by said bed, heating pad, sometimes a lover, only sometimes. when they tell you, where have you gone?, ask instead, why haven't you stayed? when you can't do lighthearted small talk at events you can hardly make it to after all, your nerves rampant screamers, this means your body in itself is a protest and a placard. what is more anti-empire? what is more bounty? do not fool yourself that everyone will understand the wonder of this, moreover, the draining of it. blessed is the stranger who watches you cough and doesn't flinch. blessed is the cloudscape greeting you at the windowsill for the third or sixth day in a row from your mattress view. holy is the wolf howl of your joints that murmur to a lull under the right temperature. holy is living or trying to.
Playwright, visual artist. Photo by Ursula Barker.
Lately, it seems practicing patience has been a brick wall, a cartoonish precipice, a general impediment that stands in the way of looking at the cohesion between life-living and art-making. Sometimes the work you do may feel like it exists in a microcosm--an echo chamber that has a much too intangible place in benefitting society. In an effort to eradicate that aching, think in terms of scale.
Maybe consider a timeline. Think of a tradition of familial work. Think of your great-grandfather (whom we never met), one of Guatemala's premiere composers. Think of your teenage brothers' consumption of new media and how it shapes their idea of telling stories. Think of a geological timeline. Think of how the rock you live on is 4.5 billion years old and you exist as one seed awaiting germination. Think of a timeline tracking love. Think of grandparents, spending decades building the perfect imperfect home. Think of making friends and losing friends and how it all has some quantifiable weight.
Days, months, years are redundant. Model the things you make from a need and a desire, not a comparison to others or the time it takes to do things. Use "illness" as a catalyst, not a crutch. The imperfect nature of the world is reflected in everything--your work, your love, your expectations. Harness that. Bring lightness to that. There is always space to make things, and there will always be people listening.
Multidisciplinary movement/dance, producer, writer. Photo by Kiam Marcelo Junio.
I'm your future self. I see you just found out that you're HIV+. I would like you to pick your face off of the floor and listen. From the day of transmission, I have been on a journey to find love and acceptance for myself. But I realize that I never was the problem. Society tells you: you're not loveable. NEVER BELIEVE THEM! Anytime, a person greets you with ignorance--drop them. There is too much beauty in you to waste. Your bloodline is a direct connection to the poz, queer ancestors who died before you. Your blood has history. The stigma is ancient, irrelevant and full of ignorance. The best self-love you can give for yourself is look for empowerment within. Keep a circle of people, who love you. Take lovers who don't stigmatize you and always walk away from bullshit.
I guess this is hard to hear at the start of transmission. You feel alone. You feel unattractive and diseased. That's a lie! Gurl, you are too cute to be trippin! There is PrEP, PEP, and tons of manageable HIV regimens. And the biggest truth of all! You, as an undetectable person, are less of a risk sexually than someone who doesn't know their status and thinks they are negative. So own it baby, love your HIV, love sex again, and love everybody who loves you.