The undeniable danger in writing about people living with HIV (PLHIV) is that it’s all too easy to pathologize us as meek cases of tragedy porn—and the reasons for this, in many cases, are understandable. Discovering that a dear friend or an acquaintance has a life-threatening condition is no cause for celebration, especially when that condition happens to be incurable.
On a daily basis, PLHIV deal with stigma brought on by rampant misinformation and the continued association of seroconversions with reckless and messy behavior. On top of this, care industries governed by inequitable power structures force us to navigate byzantine and often contradictory rules in order to access necessary health care.
What adds insult to that already grievous cut is the aching awareness that finding a cure is not a top priority for the research community, coupled with fear that lifesaving funding for essential services—medical insurance, food provisions, and housing—might be cut for arbitrary reasons.
These and countless other health, social, and psychological issues pummel PLHIV on a daily basis. And although they amount to the perfect recipe for creating a class of easily exploited social pariahs, our community continues to not just survive, but to thrive.
Panic in the Kitchen
I was reminded of our tenacity two days ago, when—as I stood in my kitchen chopping vegetables for supper—the chef’s knife in my right hand slipped and sliced the flesh beneath a fingernail on my left hand in half.
Although I told myself not to panic, and I tried in vain to take in deep breaths, shock immediately set in. My mouth filled with saliva as my lunch simultaneously lurched toward my bowels and demanded that I void. Cold sweats pooled across my toes, butt-cheeks, forehead, and everywhere in between. My heart pounded so ferociously that I feared it might burst out of my chest, and vertigo began to weigh me down as I woozily veered towards the washroom.
I cannot tell you exactly how I made it to the toilet and not a moment too soon—but I can recall the one thought that stayed with me throughout my ordeal: You have to hold on. Literally, figuratively, whatever. I obeyed that impulse—applying pressure to my finger and holding my hand above my head to stop the bleeding—as a single point of concentration.
I was on the verge of hyperventilating from panic. I feared I would not make it to an emergency room; it was late at night and I didn’t trust myself to walk there by myself. Realizing that I didn’t have my phone to call for help certainly did not help matters. That’s when I started to think that I would pass out, hit my head, and die.
What snapped me out of this funk was the fear that my landlady would find my bled-out body in a most compromising condition if I actually did die.
Laughing Through the Shit
Refusing to go out on a toilet seat, I commanded myself not to choke on my vomit, stood up and spat into the bathroom sink. Catching a glimpse of my pathetic face in the mirror did the trick for shocking me awake.
Looking at my flushed face, snotty nose, dilated pupils, and chapped lips sent me into giggles; I looked like a clown whose face had been shoved into a sink of scalding water. I reminded myself that despite this misery, I had been through worse—my diagnosis, for instance—and that I would survive because I would keep holding on.
I’ve lost relationships, jobs, friends, and dreams because of my HIV status—and yet, while losing my literal shit, I was still giggling. “If you can laugh,” I told myself, “then you can breathe.”
“You have to breathe,” I shouted out loud as if I were a motivational speaker who believed that my mirror image could hear me. “You have to hold on, and you have to breathe,” became a mantra that grounded me within my most essential truth: “I have been here before, and I am still alive.”
Pissy but True
Spoiler alert: I never wanted HIV. I lived my life in such a way that I was sure I would break my neck onstage in front of thousands of people before I would ever seroconvert. Obviously, things did not work out that way.
When I speak to people about surviving cancer, they look at me as if I’ve rescued Beyoncé from a horde of hyenas. But when I mention living with HIV, there have been times when people have pulled back from me and mouthed, “ew,” audibly and without shame. That reaction is the perfect response to me losing my shit in the wake of nearly slicing my finger off, but it has no place in my life; because, whether I am injured or healthy, HIV positive or not, I am amazing.
I have been asked if I am ashamed of having the virus. I admit that I used to feel that it was an insult to my existence, but now the only shame I feel is for inhuman people who attempt to reduce my personhood because of happenstance.
Living with a chronic illness has affected me in many ways, but it has not prevented me from writing, climbing mountains, teaching kids how to dance, or traveling around to review dance concerts. Living with HIV has done nothing but remind me that I can do anything I set my mind on accomplishing.
Because I am more than my diagnosis. As I like to tell people who are confused by my self-love: I don’t have HIV. I have a virus that I am kicking the shit out of by living well. And that virus happens to be the least interesting thing about me.
I Am a Person
If you want my secret for why I refuse to collapse in on myself, here’s the only thing I can say for certain: I have been here before, and I will continue to breathe for as long as I can hold on. And I will never let go because there is an entire community of wonderful people who are deeply invested in me living the beautiful life that I deserve. I am living with HIV, and despite the fuckshit that is hurled my way every single day, I continue to battle towards personal prosperity.
Flashing back to my finger trauma, it took me a good hour, but I finished my bathroom business, cleaned my wound, found my phone in the dish drain, and called a friend to help get me together. He reminded me that I needed to let my cut bleed again before applying pressure so that the platelets in my wound could come together to facilitate the healing process.
After bandaging me up, he cooked dinner and we ate; two serodiscordant friends who were happy to be there for each other.
I Have Been Here Before
Nearly 40 years after the Centers for Disease Control and Prevention started paying attention to AIDS, a new virus, nicknamed RONA, has supplanted HIV as the scariest thing in the world. More often than not, I’m punched in the gut by the realization that a cure for HIV is nowhere in sight. What gives me strength is knowing that our community has grown stronger than many long-term survivors could have imagined possible.
The first time I cut myself post-diagnosis—at a dance studio while helping a student clean up a broken glass bottle—it sent people scurrying away from me as if I were a walking biohazard. Now, when I bleed, people run toward me to offer help—and dinner.
It hurts, but the fact that we bleed is proof that we are alive. And anyone who lives is worthy of care. That gives me some measure of pride. I am not proud that I was diagnosed with HIV, but I am happy to bear my status openly because I have the backing of a brilliant community that refuses to let me fall.
I am living with HIV, and nothing can drag me down as long as I continue to hold on.