HIV Aids

From Self-Loathing to Accepting Treatment for HIV

There is never a convenient time to learn that you are living with HIV. My diagnosis came on the day before my birthday, six years ago. Soon afterward, to reward myself with equal displeasure, I decided to go to bed and stay there forever—like Sleeping Beauty, except with much shorter hair and no prince in sight to rescue me from my indolence.

In a pique of perverse mischief, I processed my diagnosis by trying delusional thinking on for size. I told myself that if I did not move, time would stand still as well, and everything that bothered me would magically disappear. And for a few blissful seconds each day, the world would pause; though, obnoxiously, even this state of nothingness failed to relieve the anger that I felt towards my former partner.

The unfortunate truth of our shared seroconversion was that he’d been fucking other people and lying about it during our relationship. Though I am a strict monogamist, what bothered me most wasn’t his infidelity—it was the fact that his acquiring and transmitting HIV had been a mistake. I felt that I couldn’t truly be angry with him because he hadn’t done it on purpose, which only pissed me off further because I really wanted someone to blame other than myself.

I was also annoyed to discover that he still loved me. I hated him for that, though I despised myself even more so for having fallen in love in the first place. Eager to exercise my rage, I opted to punish both of us by ending our relationship without discussing the complications of our situation, and telling him that we couldn’t help each other adhere to our antiretroviral regimen because I had no intention of taking medication.

Relishing the horror on his face after I informed him of this decision, I attempted to make it worse by telling him, “I might as well look the way I feel inside. And I’d never have come to this realization without your inspiration.”

Worse than being depressed, I was on a self-destructive streak reinforced by false piety and a need to make others bleed. And since I still believed that blistering pain, instead of self-healing or living well, delivered optimal retribution, I hunkered down and began the long process of killing myself with inactivity.

The World Had Continued Moving

Doing nothing meant trying to sleep through entire days. It was dull business, but I committed myself fully to the torture for about three weeks, until searing pain from lying down on my back without moving kicked in.

One morning, I was jarred awake by throbbing spasms in my left butt cheek that refused to subside until I started swinging my legs from side to side. I hadn’t eaten in about a week, and before I could stop myself, my body was dashing for my refrigerator, where all that awaited me was a stick of butter and a bag containing half a loaf of moldy bread.

I devoured that bar of butter as well as every visible crumb within that bread bag and prepared to return to bed. En route, the mold kicked in and left me making out with the toilet as I vomited forth everything that had just gone down. Disgusted by the zingy afterburn of my stomach acid, I clawed my way up to the bathroom sink hoping to wash out my mouth. Unfortunately a rumbling in my guts informed me that round two of projectile hurling was about to commence. Even as I threw myself haphazardly towards the bathtub, chunks of unchewed bread, mashed with butter spewed forth from my nose and throat.

Slipping over my own sickness, I wrenched the bathtub faucet on and descended into hysterical laughter between timed gulps for air and ongoing regurgitation as the water helped to carry away my stink. After my body stopped convulsing, I took a shower, closed my eyes for an uncomfortable power nap, and began the long process of wiping away my explosive mess. Feeling stir-crazy and unhinged, I threw on clothing and went for a walk around Harlem.

I was shocked by what I encountered. Despite my inexhaustible despair and foolish efforts to staunch the flow of time, the world had continued moving. The church ladies across the street still yelled at me to “comb your damn hair,” the neighborhood kids still bowled me over as they ran by, and the shady old man who sold weed on the corner still hummed, “Smoke, smoke, smoke”—even though I’d told him a hundred times previously that the only drugs I dabbled in were refined sugar and tea.

Seeing the world’s bliss reminded me of something a friend had told me the year before: “If you could be anything in the world,” she’d said, “wouldn’t you choose to be happy?” To which I’d snarkily retorted, “You can’t just choose to be happy,” only to be shot down by her reply: “But you can be a miserable piece of shit. And that stinks.”

Having already divested myself of the foulest stank in the world, my vomit, I consciously reached for the one thing that made me truly happy: dancing. So, on the corner of 137th Street and Frederick Douglass Boulevard, I danced.

Cars drove by and honked. The creepy weed guy called out, “Show them, young man!” My next memory was feeling the weed man help me to stand up from the ground where I’d collapsed, while muttering, “There you go. There you go. Let it out. Let it out.” Reassured that I was unlikely to tip over again, he passed me a small Ziploc bag of weed, returned to his spot on the corner, and continued his song of, “Smoke, smoke, smoke.”

I didn’t smoke that weed, nor did I begin a career of street dancing. Instead I called Lakey Evans-Peña―a dance innovator who teaches at The Ailey School, with whom I’d discussed establishing a production partnership a few months earlier. I told her that I’d just learned that I was living with HIV and needed to do something or I was going to die. In short, I asked for help from the right person at the right time and was blessed to receive it.

Letting Go of the Blame

Receiving an HIV diagnosis is upsetting—and even upending—but denying yourself happiness as I was trying to do will not make it all go away, as I learned. And feeling better isn’t something that happens with the flip of a switch; it has to be actively pursued. In my case, happiness reappeared in my life when I started producing dance performances with Evans-Peña. Though, even then, I continued to struggle with self-loathing, declaring my retirement from performing because I no longer felt “worthy.” Refusing to accept my self-sabotage, Evans-Peña responded, “It’s OK. Just do you. But remember that you don’t have to be right all of the time.”

Her words helped me to accept that it is OK to not be OK and to admit that my attempt to institute absolutes in my life had been a mistake. I felt out of control and believed that the only way to get a handle on myself was by stubbornly sticking to self-bruising proclamations. I thought that living with HIV meant that I should no longer do certain things, like have sex or dance. Letting go of this played a big part in changing my mind about refusing treatment.

Getting back to work on the everyday things that make up a life―the same things I’d been doing prior to me diagnosis―showed me that I was the same person that I’d always been and reminded me that I still had a lot of living to do. This is what inspired me to go after securing health insurance to cover my $3,000-a-month medication.

Luckily, I had help from people like Evans-Peña and my Gay Men’s Health Crisis advocate Angel Soto, who, as I’ve written previously, walked me through the Kafkaesque process of navigating New York State’s insurance process. That forced me to reject my prideful belief that I should do everything on my own.

I think that this is essential for people who are living with HIV to understand, especially if they are angry about their status: You don’t have to feel ashamed, nor do you have to navigate this journey alone. You don’t have to do anything, but if you’d like to overcome your grief, it will help if you think about what you actually want to do. Once you’ve got that squared away, you can get to the simple part of making it happen.

Now that I have decided that I want to live well and share my story with the world, I no longer insist that things have to occur in a regimented way. These days, I allow the process to happen and participate where I need to in order to achieve the best outcomes for myself. Things won’t always go perfectly, so whenever life feels challenging, it is important to remind yourself that despite the challenges, awesome things are bound to appear when you least expect them. But if you don’t take care of yourself, you will not be here to enjoy them.

That’s why I started taking my HIV medication and have remained in care. Because I know that my life is more than a diagnosis or a pill—it is a collection of wonderful moments that only I can breathe life into by being me. And when the final review of my life comes, I want it to be full of me at the grandest scale possible.

To all of my brothers and sisters who are living with HIV, please join me in taking care of yourself so that the world can see what you are really about. If you need help figuring out how to get that going, you can turn to an AIDS service organization or community health clinic to help you secure health insurance and, if you ask, to connect you to a qualified health professional whose only job is to listen to you without judgement. To learn more about securing those services, contact your state’s AIDS Drug Assistance Program office.

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