Nanjing, China

It was August, 2015. A month earlier I signed a year-long lease on a one bedroom apartment in the bustling Gulou district of Nanjing, putting down six months of rent upfront. The apartment was walking distance from a modern, western-style shopping center and a traditional Chinese wet market that was literally underground. In the wet market, vendors sold a dizzying variety of mushrooms and peppers, freshly butchered chickens, and live fish swimming in kiddie pools, buckets, tubs, and tanks.

In early summer, the markets were filled with plump, golden mangoes. Later on, pickup trucks piled high with pineapples parked in the leafy city blocks. Around the time that the pineapples dried up, the city flooded with lychee. I bought bunches of tangled lychee fruit 3 kilos at a time and usually ate them all in one sitting. I methodically peeled away their leathery skin and feasted on the grape like flesh underneath, which tastes of honey, citrus and roses, but most of all of roses. In the fall I looked forward to stacks of red and pink pomegranates. These I ate slowly, meditatively, one seed at a time. Pomegranates invoked stillness and calm; eating one slowed down a city that otherwise spun wildly, brimming with people, filled with the music of traffic and commerce.

My building was tucked away in a back alley that slipped inconspicuously in a gap between buildings off a major thoroughfare. The main road was lined with glittering glass towers, bejeweled with neon signs and flashing lights. These buildings were a facade; they obscured a network of older buildings that stood just behind them — Nanjing’s hidden inner city. This is where I lived — on the 4th story of a squat, Mao era apartment complex.

In my little residential district, urban farming was a matter of course. The alleyways and window sills were lined with foam planters filled with salad greens, vegetables, and hot peppers. Small children called out, “hello big brother” when I walked by. My landlord was a Chinese man in his 50s that I jokingly called “Uncle Tealeaf”, an obvious pun on his surname.

I was nesting, hardcore. I outfitted my tiny apartment with accoutrements obtained from IKEA. I purchased a new mattress and a new washing machine. Exploring the local neighborhood, I discovered a cafe run by a group of friends, local Nanjingers. To get there you had to cut through a network of back allies, and follow a sign that pointed up into what a appeared to be a private yard. The cafe itself was a converted townhouse with plenty of nooks and crannies filled with soft seating and twinkling lights.

In Nanjing’s famous sticky summertime heat, my favorite place to be in the evenings was on the porch of this cafe with a cocktail and a plate of the best tacos I ever tasted anywhere in Asia. The first time I walked into the cafe with some friends, the owners offered us a joint, which we shared and bonded over.

When I was diagnosed with HIV I was exactly where I wanted to be in the world. I was were four years of intensive Chinese language study and thousands of dollars had lead me. I had friends, a job, a new boyfriend, a new apartment, and a freshly minted and hard-won work visa.

The night I found out, Zachery and I were walking hand-in-hand back to my apartment, meandering slowly through the winding alleyways, bellies full of tacos and cubanos courtesy of our friends at the cafe. We climbed the four flights to my apartment and watched the late summer light fade to dusk from my bedroom window.

Despite the lack of free and open STI testing in China, I found ways to keep tabs on my health. I tested myself regularly using rapid results kits I purchased online from reputable western manufactures. These were the same tests used by hospitals and public health clinics in the states. Once, I even had an HIV test done in secret at a western clinic in Nanjing. The German doctor did the test under the table, kept no record of it, and charged me for a different service of approximately the same cost to hide his tracks. He even gave me the physical test, the packaging and everything, so that I could discard it myself, far away from the clinic.

Why all the secrecy? Well, that’s a complicated story. In the 1990s, Chinese hospitals had a shortage of blood and platelets for transfusions. To meet demand, for-profit companies, as well as state health departments, started blood drive campaigns in rural communities. A market developed: sell your blood, earn a little extra cash.

This blood drive campaign turned into a debacle when hundreds of thousands of people were sickened with HIV. It turned out that blood was extracted and separated using unhygienic equipment and that donations were not adequately screened for blood borne disease.

The Chinese government never publicly acknowledged the role their policies and actions played in the 90s HIV epidemic that ravaged Chinese farmlands. Instead, the government suppressed information about the number of HIV cases and spun a story about lecherous foreigners, foul with disease, who entered the country from outside and spread STIs in brothels.

The idea of the HIV+ foreigner is so prevalent that gay men I met in China often told me they assumed most foreigners had HIV, or that foreigners were intrinsically more promiscuous and more likely to be carriers of STIs.

To this day, China will not grant student or work visas to HIV+ individuals and has a policy of immediately deporting foreigners who test positive within the country. Luckily, I didn’t test positive at my immigration exam and I wasn’t deported. Like I said, I got my work visa.

But it was a close call. My positive test came just a week after my visa was issued. Back in my apartment in Nanjing, sitting on my bed with Zachary, belly filled with tacos, I opened up my phone.

With access to wifi, an alert notified me of a missed message from my doctor in the states. I had just been home for the first time in a year. While in the states, I had a routine physical that returned a low white blood cell count. I dismissed the result as an aberration. I knew HIV was one possible explanation for a low T-cell count, but I wasn’t worried about it. I had just gotten tested. I had been getting tested regularly, all with the same result. Negative. Negative. Negative.

Sitting on my bed, Zachary at my side, I called my doctor. It would have been mid morning in the midwest. I told his assistant who I was and they scrambled to find the doctor who summarily told me that I had HIV and needed to seek treatment immediately.

What happened next seems silly in retrospect; an overreaction. Writing this three years after the fact, knowing what I know now about how easy it is to manage HIV, I’m having a hard time connecting with the person sitting on their new mattress in Nanjing.

In that moment, one of my worst nightmares was realized. I was plunged into fear and burning hot shame. I somehow managed to tell Zachary I had HIV before curling into a ball and sobbing. I remember saying, hysterically “If you want to just leave me and go, you can. You don’t have to be here with me. I would understand”. My body disgusted me. I didn’t want Zachary to touch me. It didn’t feel like my body belonged to me anymore, it belonged to the virus now. Zachary stayed. I eventually let him hold me. We both knew he must have it, too.

I was wrong about my body; it is still very much mine and very much loved. But my one bedroom apartment wasn’t mine anymore. Neither was my new mattress or my washing machine or my job. I couldn’t get treated in China; Zachary couldn’t get tested without risking deportation. Our lives in China were over.

We had to flee the country. I quit my job. I broke my lease. I said goodbye to all my friends. I packed up everything I could fit in a backpack and a single suitcase and I got on a plane and I left. I may never be able to go back.

Ten days after the phone call in my bedroom, Zachary and I were boarding a plane to Portland, Oregon. My parents moved there while I was in China and we heard that the city had programs for providing care for people living with HIV. It made sense for us to move together, in a delirious, heartbroken kind of way. Neither of us had been to Portland. We didn’t know what to expect, but we swore we would face it together.

Portland, OR

With the help of the Cascade Aids Project (CAP), the Multnomah county health department, and the Oregon Health and Science University’s Partnership Project, Zachary and I entered treatment almost immediately. We were adjusting to our antiviral medication before we’d even fully adjusted to the time difference.

In a matter of weeks (in the case of Zachary) and two months (in my case) we were undetectable. Being undetectable means that the most sensitive HIV tests available, tests which look for HIV viruses by detecting their RNA, turn back negative results. Undetectable means that the number of copies of the HIV virus circulating in my system is close to zero. Undetectable means that I am healthy, have a fully functioning immune system, and, importantly, that I am not contagious.

It’s a funny thing to have your life depend on a tiny, greenish pill. Odd that so much hinges on an 800mg tablet no larger than my finger nail. With it I am a completely healthy, normal person. Without it I am dead in 18 months. Stranger still that where I work and make my residence, whether I live or die, should be subject to political whim. I fled China because of an accident of history and political narrative that made HIV+ foreigners a target. Today, from my home in NE Portland OR, I wonder if one day I’ll have to flee the United States for the same reasons.

My daily HIV pill

On July 10th, 2018, Slate broke the story on the Trump administration’s plans to divert funds allocated to HIV/AIDS patients to build detention centers for immigrant children separated from their families at the border. The program under attack is called the Ryan White HIV/AIDS Program and has enjoyed bipartisan support for the last 28 years. Since the program took affect, HIV related deaths have plummeted as have the number of new HIV infections.

The cost of HIV medication can be considerable. The medication I’m prescribed, Stribild, costs $107.8 per pill, or $3,243 for a 30 day regimen. Grant dollars from the Ryan White Program support state-run HIV drug assistance programs which cover the cost of life preserving medication for people living with HIV, including my own.

With a stroke of a pen, the medications I depend on to stay healthy could disappear. The Trump administration has already made moves to de-fund HIV/AIDS prevention efforts and Mike Pence has been vocal about his ambivalence to such programs.

I often wonder what I would do if America’s changing political landscape suddenly made it impossible for me to access the medications that keep me alive. First steps would be procuring prescriptions through black market channels, possibly from international sources. I’d have to act fast. Even a week without my medication would be enough for the HIV virus to reestablish itself and begin wreaking havoc on my immune system.

This scenario might be pure fantasy for me, but it is reality for so many others. The Ryan White program only reaches about half of the people diagnosed with HIV in the US. According to statistics provided by the Center for Disease Control and Prevention (CDC) 52% of people living with HIV in the US are not receiving long term care.

Back in April of this year, I came out as poz on my Instagram account. In the months that followed, I posted videos of myself taking my HIV medication and shared stories about living with HIV. Ever since then, almost every single day someone reaches out to me to talk about HIV.

There are so many people out there filled with fear. So many who feel alone. So many who don’t understand that HIV is a fully manageable disease, not a death sentence. I’ve had people tell me that they are afraid to start treatment because they feel ashamed. They think they are going to die. They think HIV meds will make them weak and nauseated. They want to hide. They don’t want anyone to know their dark and terrible secret.

Getting tested, going to the doctor for a prescription, picking up medication at the pharmacy. It means being seen. The doctor knows, the pharmacist knows, the receptionist knows. Who else might find out? Who will you run into leaving the pharmacy? Who will ask the squirming question? Who will see the shadow of shame pass over your face?

HIV doesn’t scare me anymore. It’s really not something worth being afraid of. One pill a day and that’s all it takes. Three years after my diagnosis, and I’m the healthiest I’ve ever been. Stigma scares me. HIV will never kill me, but the stigma could. Stigma could make it easy for others to look away as a congressional appropriations process siphons funds away from HIV treatment and prevention. Stigma could make me a target. Stigma could dictate where I live and work. Stigma could make it politically expedient for me to die.

Stigma and fear, which are really the same thing, are powerful. Fears are connected to strongly held beliefs: spiders bite, dangers lurk in the dark, germs are everywhere and can make you sick. The problem with phobias is that they are often embedded in a grain of truth, and that tiny grain of truth can have more weight than a dump truck full of facts.

What scares me most in this post-truth world is that all of the advances we’ve made in understanding the HIV virus — how to detect it, how to fight it, how to prevent it, and how to cure it — will be outweighed by fear.

With the future of federally funded HIV/AIDS treatment and prevention efforts uncertain, local HIV/AIDS organizations are becoming increasingly important. These scrappy organizations fight HIV and they fight stigma.

For more information about the HIV organizations working in your area, check out this handy search tool. Get tested, get involved, or give a donation.