Painting Myself Awake: HIV and My Search for Understanding

By Jonathan-Joseph Ganjian

The call came while I was driving back to my parent’s house in Connecticut.

That cliché trope that is the half-sullen quasi-ambiguous “come into my office, we need to talk” spilled into my ear and my mind merely hung up the phone and drove to the office numb to anything but the sound of 684’s pockmarked pavement and the dull humming of what I assume was dread.

I knew the news, knew already that eight words and three letters changed my life.

That’s about all I knew.

The next few days were a blur as I began frantically searching for solutions to the dozens of new issues facing me (some real, some imagined). Where would I get treatment? What treatment? When will I turn into the walking dead, with egg yolk eyes and sunken cheeks, sores and sarcoma scarring my body? I knew that was inevitable. I convinced myself it was because I was scared. Scared of becoming the poster-boy for all things diseased.

Living in New York at the time, I didn’t spend that winter break (the last before graduating college) doing anything but research. I became an armchair MPH, pouring over studies and learning the lingo of the seroconverted; the ins and outs of Ryan White and the myriad expectations I should and should not have. I decided (given that the virus had been detected relatively early) that I’d delay treatment until I was finished with school. What were a few months?

[Don’t take this same tack if you’re in my shoes. If I could re-do this...I would]

In the interim I think my subconscious kicked in and realized a coping mechanism of the highest magnitude was in order. I began to pick up painting again. I had started painting a few years prior to work on counteracting the motor skills issues that come with my other condition: ataxic cerebral palsy. But this time, my paintings stopped being time-consuming exercises in color theory or texture and began to take on a spiritual importance.

Fast forward: I have graduated, begun treatment at Bellvue Hospital’s amazing ACTU as part of a study and I met one of the most compassionate and understanding nurses I have ever met. She was truly a Godsend not only for me, but for my father who bore the brunt of my diagnosis especially hard. 

I think its important to the cause that I take a moment to speak on how vitally important support structures are to the newly diagnosed. I am privileged in that my father (and I to an extent) came to the situation with a great hand from having supported my mother through a 28 year battle with terminal cancer and has been my rock along with my extended family of friends from so many parts of my life.

Three days into treatment I began to show signs that I felt were the scarlet letter itself, three of them really. I was in my mid 20’s and had the very jaundiced eyes I feared from the day I received that fateful call. I had never had a panic attack before, never had anxiety. I had never felt my limbs shake uncontrollably as I sobbed in the front seat of my friends car convincing myself that I was going to have an allergic reaction to these drugs and die in spite of all the research I’d read to the contrary and the commonality of jaundice for one of my meds for completely benign reasons. 

Fast forward again: I have been successfully undetectable for a year and half, sans jaundice and found a sense of peace in working with a local AIDS organization as a board advisor (I’m a consultant.) It is now been two years since the call. Through my advocacy, speaking, and teaching in the community about HIV and AIDS I have gone from armchair MPH to full fledged advocate and semi-expert-ish. I have also been painting. 

Little things, trifles really; like my earlier pieces some sell; as a self-represented artist on the side that’s really all I ask for, sporadic acknowledgement of my art’s merit.

I don’t know what possessed me but one day following a board meeting where I heard our agency’s founder speak about the early days of the AIDS crisis, when the virus was known only as GRID (Gay Related Immunodeficiency) I went home and wrote out a list of issues vital to the cause. Vital to understanding. Vital to shattering stigma and confronting my demons. 

That list was the birth of “The Gold Series: A 50 Painting Exploration of HIV”

I wanted to pay homage to the rich heritage of art activism that marked the first wave in the 80’s through luminaries like Keith Haring (despite our entirely different styles) and collectives like Gran Fury (famous for the pink triangle on black background reading “Silence = Death” which sprang out of ACT UP) or Group Material. I wanted to use the power of abstraction where they had used the power of commercialized imagery and bold graphics to convey my messages. I wanted to use abstraction to encourage a Rothko-esque interaction between viewer, their emotions and the issues at hand.

Why, oh why, did I chose such a large number? And how on EARTH did I think this was doable in a year? I promise you, my friends never let me live this fact down. 

I chose gold as my central theme for its roots as the endgame for alchemy, birth of chemistry. These disciplines all sought to capture the nature of transformation. HIV transforms us whether we are positive or negative, gay or straight, trans or cisgender. It affects our intimacy, our humanity and our search for self. Truly, as it is (most often) borne out of sex (let’s not discount injection drug use or other much more rare ways it spreads of course) it touches the deepest parts of our reptilian brain while requiring us to keep it at the forefront of our higher consciousness (disclosure anxiety, stigma, and for many every day functioning and medication adherence). 

I wanted to use abstract expressionism to explore the emotional burdens of modern logistics relative to the high cost of medication amidst shrinking budgets at federal and state levels for ADAP (AIDS Drug Assistance) programs or HOPWA grants to help those and their families whose virus keeps them from stable work and therefore at high risk for homelessness. 

I wanted...no I needed to touch on the intersectional clusterfuck that is prevention messaging in high risk communities like MSM of color who may not identify as gay or trans women of color, both populations at massively higher risk for acquiring the virus. And most importantly, I needed to work through the effects of stigma and the genesis of risk taking behaviors that could lead someone to getting infected or not getting tested.

As I worked through the 50 pieces I realized a few (thousand) things. I realized that I needed to bolster the dialogue. I needed to push beyond my solipsistic prism of awareness. I began to write. As I finished paintings I would write a short essay about the issues at the center of the work. Sometimes only poetry would do, as all *good* poetry is, as Wordsworth says, “the spontaneous overflow of powerful feeling.” I should note that my process isn’t quick, some pieces take years to dry and I’ve created and destroyed well over 30 pieces or just painted over them to start over. But that is the nature of the beast. 

As of now, The Gold Series is still unfinished. 45 of the 50 pieces are complete with three more in progress and two left to start. But the idea has evolved so far beyond my initial goals that it is worth every delay. I am compiling my writings and once all 50 pieces are complete will be conducting a series of interviews with key HIV advocates to touch on 10 key issue areas to provide insights beyond my own and to draw our community together. This project began as my effort to heal, and morphed into my mission to create dialogue about the realities of HIV in America. 20% of the proceeds from the sale of both the book and all pieces benefit a consortium of AIDS service or awareness organizations across the United States. 

They are: GMHC, Visual AIDS, HIV=, Nashville Cares, Boulder County AIDS Project, San Francisco AIDS Foundation, and AIDS Connecticut. 


Jonathan-Joseph Ganjian is a Connecticut and New York based philanthropy and strategic business consultant who writes for fun and to spread awareness. He can be reached at Jon@JonathanJosephConsulting.com or www.Jonathan-Joseph.com