“You two should go back to St. Louis. The doctors think it’s going to be a couple weeks,” my mom said.
“Okay,” I said. Sergei had a couple interviews he wanted to take and I had to do some clients, so we decided to go back to St. Louis.
Before I left to drive back, my mom said to me, “Steve’s going to die on our wedding anniversary. I just know it.”
“That’s never going to happen,” I said.
The next week was their anniversary. That morning, my mom called. “You need to come home,” she said. I had just started my first client. “Steve’s gonna go today.”
I dropped the phone and started to cry. The girl whom I shared my rental room with looked at me. “What’s wrong?” she said.
“That was my mom,” I said. “My stepdad’s gonna die today.”
“Hold on a minute,” she said. She dropped down and pulled four Klonopin out of her purse. “You’re gonna need this,” she said.
I went home and called my cousin, who said she was on her way to St. Louis to pick me up. I popped a Klonopin and packed a few days’ worth of clothes. As I got in Alexis’s car, the lightening and intoxicating effects of the Klonopin began to kick in. To my surprise, all of a sudden, Steve’s impending demise felt overshadowed by the tasty allure of a Texas sheet cake at Walmart, and also by the number 7 combo meal at Taco Bell, both of which I forced Alexis to stop on the way home to get. It was like if I could invent any more stops before I got home to Quincy, it would just put another fifteen minutes between me and watching Steve lose this fight.
When we walked into the house, Steve was in a hospital bed in the living room, where he used to sit in his chair. Everyone was there: both of my brothers and their wives, my stepsister, and both of my grandparents.
I sat numbly, eating my Taco Bell. My brother left to go get some ingredients to make guacamole. Our grief was leading us all toward Mexican food.
It was five o’clock. Sixteen years ago, I thought, right now, we were all taking pictures in little tuxedos, and my cousin was in her champagne-colored bridesmaid dress, and my mom was in her wedding dress, and we were getting ready to become a bigger family. Now I was listening to my stepdad begin to make the early sounds of the death rattle, which is when your lungs are dying and begin to fill up with fluid.
“It’s happening,” my stepsister said. Before you go into hospice they give you a book telling you what to expect from the death process. Steve had slowly but surely checked off everything on the list, one by one, to my horror. Picking at his clothes. Talking to people who weren’t there. Bouts of anger. The death rattle was the next thing on the list.
We gathered around and held hands. “Let’s say the Lord’s Prayer,” my mom said.
After we said it, in unison holding hands around him, my mom said, “Lord Jesus, Steve has fought the good fight. Send your legion of angels down and take him home so he can stop suffering.” When she said that, we all went around in a circle one by one and said our goodbyes to Steve. When it came back to my mom, she said, “Take him home.” And with those words, on his side, he took one more little inhale and that was it.
Everyone just bent over. My grandma fell on the couch. My stepsister threw herself on him. My mom turned and ran into the bathroom. I followed her. She was waving her hands in her face. “I can’t believe this is happening,” she said in agony. I watched her as she paced back and forth. “I can’t believe this is happening,” cringing with every word.
She wiped her tears away, walked back to the kitchen, and called hospice right away. Within five minutes, a team of three hospice nurses were in the house, collecting the morphine. My mom didn’t leave Steve’s side. Their dog, Abby, this Goldendoodle they’d adopted together six years prior, wouldn’t leave his side either. But for the rest of us, seeing them move him onto his back and put him into a body bag was too much. So we went into the front room and we waited. A half an hour went by. It was six o’clock, which was exactly when their wedding had finished sixteen years earlier.
I heard the wheels of the stretcher carrying Steve start to move. I heard Abby’s paws follow right behind all the way to the front door. She would sit there for three days, waiting for him to come back.
I went outside, calling Sergei, screaming for him to come to Quincy. He said he had to work and he would be there the next day. There was nothing he could do.
At the end of that day, when the person I’d loved and put through unspeakable pain couldn’t show up for me, that was the instant where I went from psychotically depressed to truly not caring if I woke up the next day.
As I sit and write this now, all these years later, with all the work that I’ve done and everything I’ve been through, I care so deeply about myself and what happens to me and what happens to my body and who I let appreciate it. There’s a self-respect that I have fought so hard for since that day. But as much as I care about myself today, I felt the complete opposite then. There was nothing so bad and nothing so reckless that I didn’t think I deserved it.
* * *
Steve was gone and I was shattered. After the funeral, we went back to St. Louis. I was completely numb, two months into cold-turkey antidepressant withdrawal. Completely empty. I wasn’t suicidal in a classic sense, but I didn’t have a bone in my body that cared about what happened to me—if I overdosed on some drug, or ended up in the house of somebody who killed me, or got any kind of disease. I didn’t care. I didn’t know who I was anymore, but I knew where I needed to go.
Sergei was coming home one day just as I was leaving. “Where are you going?” he asked.
“Oh, just to go do a house call,” I said. For my nonexistent clientele.
My “house call” was actually another instance of sexual acting-out behavior. After sufficiently retraumatizing myself, adding copious amounts of drugs to the equation, I went straight to the bathhouse. I had realized the depths of my own Jekyll and Hyde. I was hurting myself in such an extreme way that I had effectively put my soul through a food processor.
I’d been there for a couple hours, looking for other people in the throes of their addictions, seeking the dark energy of validation and light of day the world had denied us. It’s not real validation—it’s poison validation that slowly eroded our souls. I was drunk on that poison. She was Sodom and Gomorrah in St. Louis, Missouri.
Roaming from room to room, from dark hallway to dark hallway, from one anonymous partner to the next, with my eyes fixed at a downward forty-five-degree angle, I saw the bottom half of a clothed body. I looked up and it was Sergei. His eyes were huge and studded with tears. He looked horrified.
“Come home,” he said.
“What are you doing here?”
“You don’t need to be here,” he pleaded.
“Get out,” I said. “Please go. I’m not coming home.”
“Come home,” he said. “Please come home.”
He picked me up. I was trying to shove him off me. Finally, he put me down.
“I have to go collect my things,” I said. Shaking off Sergei, I popped off into one more stranger’s room for one last hoorah. The lengths to which I went in my grief and addiction surprised even me, but even more surprising was that no matter what I did to myself I couldn’t feel anything. I no longer had feelings, I had turned into pain, I had turned into suffering. I had nothing left to give. When I was finished, Sergei met me outside and we went home.
I don’t know if it was the relentless battle against sexual compulsivity that I was facing, or the misery we were both enduring in St. Louis, but Sergei had had enough. He and my mom sat me down and told me that she would be financing his move back to Los Angeles and that he and I were done. I was crushed. I knew that Sergei and I were in a really bad place, but I thought in light of everything that had happened with Steve, he would give me one more chance.
He couldn’t.
He moved back to Los Angeles. And I stayed behind, coming at my inner child with every sharp object I could find.
Maybe the solution was that I needed some other kind of rehab. I found a weird outpatient twelve-step therapy in my hometown, only instead of a general “higher power,” the God of your choosing had to be Jesus.
On my first day, the leader of the program looked at me. “Lemme ask you something, son,” he said. “Do you believe that Jesus could deliver you from your homosexuality?”
“I’m gonna go get Starbucks,” I said and beelined for the door and never went back.
* * *
Between me and Sergei ending, Steve’s death, and the stress of moving across the country, I got sick. And I don’t get sick often, but when I get sick, I get sick.
I had an appointment set with one of my four loyal clients in St. Louis, but I was so sick I thought there was virtually no chance of me making it through. My head was pounding and my throat was sore. Still, I knew I couldn’t cancel on her. She was one of the best clients I had, and she made me feel like I wasn’t a total flop.
When I got to the salon, I felt faint and dizzy but I was sure that I could power through it. All of a sudden, I saw stars and felt my body collapse. The next thing I knew, her tray was beside me, I was faceup on the ground with hairdressers standing over me, and my client was crying. I had fully passed out, flat-as-a-board, in the middle of doing her buttery blond highlights.
Waking up, I immediately thought: Oh no. This feels like a story that I’ve heard before. This is that flu that just won’t go away. This is that persistent fever. But maybe it’s not. I’ve been in front of the firing squad before and always come out fine. I had already taken a Z-pack. I knew I had to go to Planned Parenthood and get tested.
I scraped myself off the ground and a friend said she would finish doing my client’s hair. I went home and went to sleep.
The next day, I went to Planned Parenthood and asked for a full STD panel. In the little exam room, a nurse came in. She told me the rules of the rapid test, which I’d heard multiple times before. Then she swabbed my mouth. She said she’d be back in ten minutes.
Ten minutes turned into fifteen. Fifteen minutes turned into twenty. Twenty minutes turned into thirty. My heart began to sink.
I heard shuffling outside the closed waiting room door of what sounded like several pairs of feet. There was a faint knock.
“Can I come in?” the nurse said gently. In after her walked two other women who seemed fidgety and nervous.
Suddenly it dawned on me: These were all girls in training and this was the first HIV+ test result they’d had. They wanted the girls to sit in on the appointment to see how it was done.
“Do you mind if these trainees observe while we discuss your results?”
“Yes,” I said. Tears sprung into my eyes. “Yes, I absolutely fucking mind. No, they can’t sit in here. Please, get out.”
The trainees looked chastened. They left in silence.
The nurse sat down next to me. Quiet tears were streaming down my face. I looked down at my green cargo shorts, wiping my tears on them.
When I looked up, she was looking at me. “You have a preliminary positive result for HIV,” she said. The dam broke and I started to sob.
She told me that they needed to take a little bit more blood to send to the lab and that I would need to go to a specialist they would refer me to for further testing. With that initial blood sample, they confirm that you are definitely positive, and that it’s not a false positive, and they identify what strain you have and if you have any mutations.
She showed me a disclaimer printed out on a sheet of paper and explained it to me. It said that as of this date of that year, if you had sex with someone and don’t inform them of your HIV status, you’re considered a bioterrorist, and it’s a felony. She had me sign it. My hand shook as I held the pen.
Then she started talking about the appointment for my follow-up. At that point, everything faded into gray.
“Can I go home now?”
I shakily walked to my car, got in, and was driving home, and I realized that my car was shaking because my hands were so unsteady as I held the steering wheel. I pulled over and called a family member.
“Don’t tell anyone what I’m about to tell you,” I said. “But I have HIV. Please do not tell my mom. Please do not tell anyone.”
The family member said, “Call me as soon as you get home,” and I promised that I would.
Thirty seconds later, my phone rang. I looked down and it was my mom.
Crying.
One moment after that, both my brothers called, one after another. Crying.
Within minutes, every single person in my family had called me in belligerent states of duress.
My mom informed me that she had just downed her bottle of Kaopectate and would be sitting on the toilet for the next six hours because she had a colonoscopy the next day, so my brother got in the car to drive to St. Louis. I was stuck waiting for him to arrive.
That day was just as devastating as you would think it would be. But at the same time, I had this sense of relief—that the lifelong fear I’d had, since I was a six-year-old boy, was finally over. The monster under the bed that had been chasing me for so long, that I had been so desperate to avoid, had finally caught me.
Everything had changed. Yet everything was much the same. I smoked a joint and ordered a shitload of my favorite Mexican restaurant takeout and got a liter of white cheese dip, then ate it all with my brother.
My worst nightmare had been realized, and I was still here.
For my first follow-up appointment a week later, my mom asked if she could come. I said that was okay but only if she didn’t cry or make a scene.
My doctor was a cute little Filipino lady. The first thing I remember asking her is: “Do you think I still could live to be seventy-five?” I was twenty-five at the time.
The doctor chuckled. “I’ll keep you alive long enough to die of cancer or a heart attack like everybody else,” she said. She informed me that HIV treatment has come a long way and it is no longer a terminal illness, but a chronic one that is relatively easily managed with daily medication. In fact, she said, nowadays life expectancy is fifty to seventy-five years from diagnosis. I was just thinking, Shit, I could still turn this around, when . . .
I heard a thud and turned my head to see my mom falling off the chair onto the floor, fully sobbing but trying not to. She was crying so hard that no noise was coming out except for a dog-whistlelike squeak. Her face was purple like she was suffocating.
“Anne!” I snapped. I always call her that—by her mom’s name—when she is being in any way extra, in the way that her mom was to her. “Go to the waiting room! You promised you wouldn’t make a scene!” Like a cute little gray-haired puppy, she tilted her head, as if acknowledging that she’d bitten off more than she could chew in coming to the appointment at all. She waited for me out in the lobby. Again let me just say how much I love my mom, and I’m so sorry I put you through so much—you are the best mom I could’ve ever asked for.
I got about seventy-five vials of blood drawn that day. With the blood work they had done, the doctor could determine exactly how far the virus had progressed, and all the different medications that could work to stop it in its tracks. At the time, there were numerous families of medications, and my virus was able to be controlled by any one of them. We decided on one that was an all-in-one drug, so it was just a once-a-day pill. With that antiretroviral prescription, in two weeks’ time I was undetectable.
I think that’s super important to note here. Within just two weeks of being on medication, HIV was undetectable in my blood. People who achieve and maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner.
“Undetectable” is a term that applies to many people living with HIV. An undetectable HIV viral load means there are so few copies of the virus in your blood that the test cannot detect them.
Even the CDC (Centers for Disease Control and Prevention) agrees that a person with a
n undetectable viral load effectively poses no risk of transmitting the HIV virus through unprotected sex. An HIV-positive mother with an undetectable viral load can even deliver her baby with less than 1 percent risk of transmission, as long as the mother takes HIV medicine daily throughout pregnancy, and the baby takes it for four to six weeks after birth. The mother thing doesn’t totally pertain to me—I just think it’s incredible how far we’ve come in HIV/AIDS treatment.
Knowing all of that and communicating it is difficult. Sometimes it feels like I’m convincing people I’m okay, or “clean,” or “safe.” It’s always best to do your own research; all the facts are out there.
Once I was undetectable, I was no longer at risk of infecting anyone. And I knew I hadn’t infected Sergei because we only had protected sex, and I knew that any chance of his risk of exposure was none, because we hadn’t been sexual in a very long time. Once I found out I was positive, I never held back my HIV status from my sexual partners. No matter how clunky and no matter how many dates or sexual encounters it meant I wasn’t having. The people who pose the greatest risk for HIV transmission are people who have been exposed to the virus, have developed the infection, but are not on medication. Their viral loads can be very high, which means they are contagious. This is why HIV education and access to testing continue to be so important.
When it comes to HIV transmission, certain sexual practices put you at greater risk of infection after exposure—namely, if you’re on the receiving end of anal or vaginal penetrative sex. Clutch your pearls as you may, Aunt Lydia or Susan, but these are the types of conversations that must be destigmatized in order for us to reduce HIV and AIDS and increase sexual health in general.
The culture of education and knowledge around HIV is two different worlds pre- and post-PrEP in my view. PrEP, or pre-exposure prophylaxis—a once-a-day medication that can prevent HIV infection in HIV-negative people—would hit the market months after I was infected. I have lived with the virus through that time and the extent to which it’s been destigmatized since then is heartening.
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