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What my Mother Taught Me About HIV and Didn’t Even Know

Photo by Odemaris Byrd for Posture Magazine

Photo by Odemaris Byrd for Posture Magazine

It’s interesting the ways in which one’s whole world can flip on its head because of three letters—HIV– almost as interesting as the way we can let those three letters hold us hostage from time to time. Before my seroconversion at the age of 24, the virus was admittedly relegated, regretfully, to the public sphere of whispered gossip between overpriced cocktails with friends, conjecturing about rumors we’d heard about those who bore the stigma of the dreaded plus sign.

The thing with becoming one of these cross-bearers is that for me, it opened up the possibility of an entirely different world view and helped me to forge a new connection with my mom. Somehow, I don’t feel that when many of us found out we were HIV positive our first thought was, “Eventually I have to write a book about this.” Well, for some reason that was my reaction– but why? Why didn’t I engage the first emotion most people would associate with such a watershed event? Shouldn’t I be feeling terrified, confused and alone? I wasn’t. For one thing, I think of my virus as any other disability that may have found its way into my life; I have my mother to thank for this.

I can walk a line as straight as I am.  Why? I was born with cerebral palsy–specifically the most rare form, ataxic, which affects my balance, depth perception and the growth of my lower body. This meant growing up with leg braces, Coke-bottle glasses, an eye patch and countless hours of occupational and physical therapy, which, unsurprisingly, made me quite an outcast, since children aren’t always the most enlightened in these matters. Here’s where it gets interesting; my parents never told me about my CP–not a word. It was simply the way things were and I had no choice but to forge ahead. I was under the impression that I simply was handed a less-than-fantastic hand, but so was everyone else, in their own way. I didn’t put a diagnosis to these symptoms until I found myself clearing out my father’s garage, where I stumbled upon old medical records. Why would a parent choose to do this—to keep his kid in the dark about a serious condition? My guess was that my parents felt putting a name to the issues I had would allow me to track myself and form excuses for not doing things or not dreaming as big as I could have on account of having a “disability.”  And years later, I find myself asking, why should HIV be any different for us?

"Phoenix" by Jonathan-Joseph Ganjian

“Phoenix Rising” by Jonathan-Joseph Ganjian

We are bombarded by messages of hate, discrimination, fear and misunderstanding on a quotidian basis; just like it is for the kid in leg braces in elementary school, life appears to be a series of stigmata. After all, “we” are the reason for the FDA blood ban; “we” are subject to a unique brand of stigma that is informed by the psycho-sexual implications of the ways HIV is transmitted, along with its prevalence among MSM (men who have sex with men). HIV in the gay community is actually a rather interesting thing in and of itself when you think about it; after all, the world at large considers HIV a “gay disease,” while the chasm between the negative and positive sides of the gay community couldn’t seem wider and is begging to be closed.

My mother taught me to live as though disability doesn’t define me, even as she fought her own battles, through her handling of my diagnosis of CP and in her own tenacity in the face of a twenty-plus year battle with breast cancer. In spite of losing a breast and a lung and going through many chemo and radiation treatments, she held her head high and raised her family while managing to work right until she died in 2006—twenty six years after having been given a death sentence. Isn’t that how a lot of us feel when we hear the words, “You tested positive for HIV”?  Don’t we hear the pronouncement of a death sentence?

Thanks to modern medicine, HIV is no longer the same “Masque of the Red Death”  that it was the 1980s, but for many, it still feels that way when combined with the social stigma that lingers in phrases like “clean” or “std free–ub2,” or in the  missed connections who are interested in you until you disclose. But just like my leg braces and my mother’s wig, none of it really matters if we look within ourselves to find the truest sense of who we are–removed from petty distinctions (in Buddhism, we’d call it a wall of the mind).

What drives me to share this story and its underlying message with you is that we who recognize and embody our HIV-positive status are whole and complete and worthy of love and respect from ourselves and others. Helping the negative community (gay or straight) realize that HIV is no different than any other condition starts with how we view it within ourselves. We must learn to live HIV-neutral within our own hearts and minds before we can expect the greater public to do so, and it is in that spirit that I ask you to love yourselves–not your virus, because you are not your virus just as I am not my CP, my mother was not her cancer, and my father is not his diabetes.

What we all are is human.


jonathan-sqJonathan-Joseph Ganjian is a New York and Connecticut based creative professional with a focus on making the world a better place and empowering his clients to think outside the box.  As a contemporary artist and film producer he brings a creative streak to his more white-collar work as a strategic planning and fundraising professional; for which he is currently completing a Masters in Fundraising Management at Columbia University.  He also holds a Bachelor’s degree in English Literature from Hofstra University.

With over a decade working as a speaker, advocate, workshop facilitator and consultant, Jonathan has a unique take on not-for-profit strategy, governance, cause marketing and development.  Jonathan also co-founded Art Of Dharma where their content reaches almost 7 million people through their website and social media presence.  Jonathan is always looking for new and exciting projects, collaborations, clients and advocacy speaking engagements.  Check out his website at www.Jonathan-Joseph.com to get in touch and get a sense of both his work and art.

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