This story is also told on the “The Sweet Hereafter” podcast of Kevin Allison’s RISK! Show.
We planned a quiet Valentine’s Day. It fell on a Thursday and early the next morning, we were getting into a car with a married lesbian couple to drive to Washington, D.C., for Dark Odyssey Winter Fire, an annual weekend-long kink event at which I’d be presenting.
Kay always joined me for these events, often acting as my “demo bottom,” meaning I’d use her body to demonstrate whatever technique was being discussed. Of course, it was also an opportunity to display her nude beauty, always a real crowd pleaser. Our easy banter and comfort with one another made us appear like a magician with his assistant—a sleight of hand in which the audience is largely unaware that only the assistant’s collaboration insures the resulting magic.
I had heard of an organization offering HIV tests as part of a study. Not only were the tests free, each participating subject was reimbursed twenty-five dollars. We were due for testing anyway, so I proposed to Kay that we each get tested and regard our combined fifty bucks as Valentine’s Day mad money; we could have our fingers pricked, get the results, enjoy an early dinner on this study and get to bed by midnight.
She laughed that this wouldn’t exactly be our most romantic Valentine’s Day. We’d set that bar pretty high four years prior when I took her to see Sharon Jones and the Dap Kings, then to her first sex party and capped off the night with a pre-dawn dinner at White Castle (which, in case you don’t know, puts on a very nice Valentine’s Day).
I noted that the organization targeted gay men. I sent an email to ask if the study was available to bisexual men and women who have sex with men who have sex with men. No one had asked that before, I was told, but yes, we were both eligible. I made reservations for our Valentine’s Day date.
I was waiting in the lobby when she arrived from work. “These things always make me nervous,” she said as we took the elevator. “I mean, I’m not worried or anything, but still . . .”
“It’s anxiety provoking,” I agreed. “I’m not worried either, and you get results in about twenty minutes, but that’s a tough twenty minutes.” She knew this; we’d accompanied each other to get tested many times. We’d even taken her sister to her first testing. I took her hand. “And remember, honey: fifty bucks.” I rubbed my fingers together. “That’s a lot of White Castle.”
She shook her head. “I’ve found a cheese restaurant. Leave that to me.”
We signed in and waited briefly in a small room filled with posters, brochures and bowls of free condoms. I stuffed my pockets with condoms, as I always do. Kay swatted my hand, as she always does.
A man emerged from an office. “Jefferson and Kay? Hello, I’m Herbierto. I’ll be your counselor and conducting your tests today. Would you care to step into my office?” We gathered our coats and followed. He offered us chairs in a small room and began to sit. “Well, this is refreshing. I have to say, we rarely get male-female couples.” He stopped mid-sit. “I’m sorry, that was presumptuous. Do you identify as male and female?”
“Yes, that’s right,” laughed my beautiful, femme, long-haired girlfriend.
“I appreciate being asked,” answered her bald, bearded boyfriend.
“Well, one can’t be too careful, right? Okay, so I’m going to ask some questions, just very standard intake before testing, and then we’ll do the tests themselves. Have you been tested before?” We had. “And do you want to get tested together?”
“Sure, we’re each here to get tested,” I replied.
“No, I think he means, do we want to get our tests done at the same time. Together,” Kay said. “Is that what you mean?”
“Yes, I’m sorry if that was confusing,” Herbierto said. “Some couples do, some couples don’t. If there’s any concern or preference, of course we can do it separately.”
“There’s no concern,” Kay said, looking at me. “Right?”
“Oh, no, right. I’ve just never been asked that question. Sure, we can do it together.”
“Okay, good. I’m going to make notes as we talk and you’ll sign these forms.” Herbierto’s copper bracelets jangled on his desk as he wrote. He ran through standard questions I’d heard for over twenty years, Kay for about five. We’d both been tested in the previous year. Neither of us used intravenous drugs. Neither of us had any immediate health concerns. Neither of us feared we’d put ourselves in danger if we had a bad result. We both understood the testing procedures as Herbierto described them. We volunteered that we were in an open relationship. “Oh, that’s interesting,” Herbierto noted, scribbling. “Do you have other regular partners, or many, or . . .”
“We each play with other people at parties and stuff, but honestly,” I said, looking to Kay for confirmation. “Not that much lately.” I hadn’t realized it until then, but we rarely had sex with our friends at parties. Not like we used to.
“I’m seeing one other guy, for about a month,” Kay volunteered. “We only play safe.”
“Yeah, and I guess I’m dating two other women,” I added. Only two? Was that right?
The discussion led to our revelation that we go to orgies and that the next day, we’d be off to a kink event. Now we all let down our hair a bit; Herbierto knew about such things, and so we felt comfortable talking about them. In time, we moved to the lab for the tests.
The tests are simple. We’ve done them many times. A finger prick to each of us and we were sent to the waiting room. We had twenty minutes of anticipated undue anxiety. I held her hand as we talked about the cheese restaurant she’d discovered, keeping our minds on the night ahead. It wasn’t yet eight. We’d be there before nine.
Herbierto called us back into the lab. Kay and I sat next to one another in folding chairs.
“Okay, so I have the results to give you. One of you is nonreactive and the other is reactive.” He looked at me. “Jefferson, your test is reactive.”
My mind numbed. “What . . . what does that mean?” Kay asked.
“It means that your test came back nonreactive to antibodies to the HIV virus, meaning HIV isn’t detected. Jefferson’s test came back reactive, meaning antibodies to HIV are detected.”
She looked at me and then to Herbierto. “Is there any chance that’s wrong?”
Herbierto shook his head. “Everyone wants to think that, but these tests are ninety-nine point eight percent accurate. ELEXIS tests—that’s what they’re called—are the most often used because they’re reliably accurate. So what I can do now is try the test again.”
“Yes. Do that,” Kay said. She turned to me. “Baby, what’s happening?”
I shook my head. “I just . . .” I had nothing to say.
“Jefferson?” Herbierto stepped toward me. “Are you going to be okay taking the test again?”
I nodded. “Yes, let’s do another.” Herbierto pulled on gloves, unwrapped a test and pricked my finger. Kay followed him to watch it be processed as Herbierto explained the steps and showed her how to read the results. I sat in my chair, arms resting numb in my lap.
The test results were the same: reactive.
I was then given another test. The Western Blot test required smears of my blood on a card. The card would be sent to another lab. Those results would be back in one week.
Herbierto took us down the hall to meet with the project director. The two of them explained that I would need to come back in a week to hear the confirmation result of the Western Blot test. At that time, they would begin to walk me through the steps of treating my HIV.
However, at this time, we needed to address Kay’s situation. We had had unprotected sex within the previous forty-eight hours. Therefore, she needed to immediately begin a regimen of post-exposure prophylactics, which would require prescriptions they were unable to provide. They would accompany us, now, as we walked to the emergency room at Mount Sinai, where she would be tested again and given medication.
We gathered our coats and waited as Herbierto and the director went through the steps of closing their office. We were the day’s last clients.
“Oh, nearly forgot.” Herbierto stepped behind the reception desk and made notes in a ledger. “Here,” he said, placing it on the counter. “Sign here and initial here. I need to give you each your twenty-five dollars for participating in the study.”
“This is the hardest twenty-five dollars I’ve ever earned,” I said, scribbling my signature.
Kay and I held hands as we walked to the hospital with Herbierto and the director. It was a cold, clear night. We passed couples with flowers and red balloons.
Herbierto took us to the reception desk in the emergency room and explained our situation, adding that it was time-sensitive, as we had recently had unprotected sex. Kay filled out forms as the four of us sat waiting. Soon, Kay was called back. I was allowed to accompany her. Herbierto and the director offered to remain in the waiting room for as long as it took.
We sat with a nurse and Kay was once again interviewed about her medical history and our sexual activity. We were then brought to a bay and told to wait. Kay sat on a bed.
We were now alone for the first time since meeting for our tests. Kay began to cry. “Jefferson, I don’t understand. How is this happening?”
I sat next to her, pulling her head to my shoulder. “I don’t know, girl.” I kissed her head. “This is so hard to believe.”
“Is there something you’re not telling me? Please, tell the truth.” Her words were soft.
“No. There’s nothing.” It was true. I couldn’t recall anything that had happened since my last test that would have put me—us—at risk. “There’s no . . . I’m being truthful . . . I can’t think of anything.”
She sat back. “But you would tell me if you did. You’d have to.”
I rested a hand on hers. “I would.”
She slumped forward. “What if I have it, too?”
I felt my own tears, now for the first time. “Baby, no, that would be the worst. I’m so glad you’re okay.”
“For now. I have to keep getting tested.” She brushed the hair from her wet cheeks. Her words faded into tears. I held her hand to my lips. We sat quietly.
Time passes slowly in an emergency room. Eventually, a nurse in red scrubs came to us. Once again, Kay was interviewed about her medical history and our sexual activity. Blood was drawn. We were told to wait.
It was about eleven. We agreed that there was nothing more that Herbierto and the director could do that night. We could manage. I went to the waiting room to let them know. Both offered to stay longer, but if we were sure we’d be okay, they’d go. They both hugged me and implored me to call if we needed anything.
Kay’s test came back nonreactive. She was given prescriptions and samples of her medications. She was to take them twice daily for three months, when she would be due for the first follow up tests. She swallowed two of samples and signed some forms. We gathered our things and left by midnight.
We walked past the darkened park and closed shops. We knew we should eat and, in a curious way, we were determined to have our Valentine’s date. The cheese restaurant was closed, as were most in the area. I knew of a place near St. Mark’s with nice ambience. We arrived to find that at this hour, it was a hookah bar with a limited menu. I suggested we get away from the cloying smell, but she was hungry and tired, so we stayed. Over hummus and wine, we relaxed.
“It feels weird to just be sitting here, like nothing’s happened,” she remarked.
“It does. I mean, happy Valentine’s Day.” I raised my glass. “Not our most romantic, but certainly momentous.” She laughed and clinked her glass. “Now, let’s talk about anything other than the elephant in the room.”
As we talked, we realized that we were due to meet our friends in a few hours to drive to a kink event where I would be presenting. “We can’t do that,” she said. “It doesn’t seem right and I can’t stop myself from crying every time I think about this. Not that I’ve stopped thinking about it.”
I had to agree. There was no way I could spend a weekend presenting on sex and kink having just learned that I’m HIV positive. Not only that, some of my presentations involve hands-on interaction. While I always used gloves and barriers for these, I would need to tell my demo bottoms of my new status. I wasn’t ready to do that. I wasn’t ready to tell anyone.
We returned home. I wrote to the event organizer to regretfully withdraw from the roster. I texted our friends to say we wouldn’t be able to join them; we could pay for gas as promised so that they weren’t stiffed. My excuse was an unspecified “family emergency.”
The event organizer replied the next morning that all was understood and to be well.
Our friends replied with concern. Are you and Kay all right? Are your kids okay? Don’t worry about the gas money; what’s going on?
I replied that I appreciated their concern, and thank them for it, but this is all I can say for now. They understood and offered love. They’d be with us when we needed them. I asked them to pass on word to our friends that we were sorry we’d be missing them.
Kay and I now had a three-day weekend in which to adjust to the news.
I could tell that I was numb. I didn’t feel denial—I was sure this must be true—though I didn’t understand how it could be true. I didn’t want to think about it. I knew I would have to, once I met with Herbierto again to go over treatment possibilities, but that was six days in the future. I still had this remaining time in which no one had to know my status, and I didn’t have to acknowledge it with every choice I made.
For now, I wanted to make coffee, as I always did, and to spend days with my beloved, as I always did, and to avoid sex with her, which would be alien and saddening.
Kay responded differently. Her mind raced with questions. How did this happen? What would she tell Jed, the friend she’d just started dating? What would this mean for us? Would we now just be friends, or roommates? Would she get sick? If not, would she find someone else to be with, though she loved me, and wanted me to know that, but what if . . . ?
I listened as she worked out these questions, replying, over and again, I know, it’s hard, we’ll figure things out as we can. I’m sorry I’m not in a place right now to come up with answers to these questions, but we will. I’m sure counseling will help and that was my next step. She understood, but her mind raced.
Whereas I felt resigned to powerlessness, she couldn’t rest with that. She busied herself on websites, learning more about symptoms, treatments, options.
I felt I already knew all I wanted to know about HIV. I had ended my primary education on the virus in nineteen-ninety-two.
When Lucy and I moved to New York in nineteen-ninety, one of the things I most happily anticipated was reuniting with my high-school boyfriend, Donnie. He’d moved to the city just after graduation, and I’d visited him often over in the intervening eight years. Now, we’d be able to visit frequently.
He and his boyfriend Chris helped us to move into our new apartment, a fifth floor walk-up on York Avenue. Always thin, Donnie seemed emaciated. He nonetheless insisted on carrying our air conditioner upstairs on his own.
Not long after, I met my high-school girlfriend Debbie for coffee. As we parted, she said she was going to visit Donnie in the hospital. “Oh no, what happened?” I asked, knowing the answer, hoping her answer would be better news. Maybe he’d only been hit by a bus.
“Jefferson, Donnie has AIDS.”
I knew that. I knew that.
I joined Debbie on her visit. Donnie was sheepish when he saw me. “Honey, I’m sorry I didn’t tell you yet.” He threw up his hands. “Surprise!”
“Well, you sure got me this time.” I sat next to him in bed, resting my head on his shoulder.
Over the next two years, I was one of a handful of friends who helped Donnie to die. Because I resembled him, I collected his benefits when he was hospitalized. We made his medical decisions when he was unable. We took shifts so that he was rarely alone. We helped him to walk until he was no longer able. He died with Chris by his side, as I took a cab in a vain attempt to outrace death. The last time I touched the young man I loved, who had been the boy I loved, it was through a vinyl body bag.
At age twenty-seven, I had had enough of HIV.
Now, I was the infected boyfriend of Kay, age twenty-eight.
The next day, Kay found a clinic that offered the RNA test for HIV. The test is more reliable than ELIZA, the finger prick test that we’d been given, but less commonly given due to its exorbitant cost: typically, upwards of five-hundred dollars.
The clinic Kay found charged three-hundred dollars for the test. She was going to make an appointment. “Do you want me to make an appointment for you, too?” she asked. “I’ll pay for it if you can’t.”
“No, thanks, baby. I’ll get my confirmation this week. No sense wasting the money. Besides, I don’t think I can take hearing the news again.” I understood Kay’s desire for more information. My diagnosis gave me more information than I wanted. Hearing more about it was soon to become the focus of my life.
Kay’s appointment was scheduled for the following day. We spent that day as we normally would—minus sex—regularly commenting on how odd our normality felt. I fielded texts from friends at the kink event. All expressed concern for our “family emergency.” On most weekends, no one would notice if we simply laid low. On this weekend, I had been booked to make a public appearance and our absence was observed by many.
On Saturday morning, we picked up our CSA, dropped it at home, and walked to get Kay’s third HIV test in as many days. I waited at a Dunkin Donuts as she went into the clinic. She soon returned with the results. She was negative, confirming the nonreactive result of the ELIXIS test. We hugged outside the doughnut shop, relieved at this more definitive return.
We decided that we should go ahead to fill the prescriptions, as that had been the treatment when Kay first tested negative. We could discuss this with Herbierto when I went in for my result.
This result was good news, of course, if perplexing: I was HIV positive and my partner of five years was negative. Did this mean Kay might have been exposed much more recently than my most recent negative result? If so, did that close the window even more on the activity that caused my exposure? I didn’t want to raise this with her, but I racked my brain for possibilities and found none.
We didn’t want to discuss this with anyone until we’d had time to process it ourselves. Kay didn’t have a pending date with her new boyfriend Jed, so she didn’t need to bring it up yet. I’d planned to be at the kink event and had no dates planned, either. At one point, I questioned how I would raise this with my kids.
“What if you didn’t?” Kay asked.
Her reply seemed to be formed in a language I didn’t comprehend. Of course I would tell my kids, and all my family. I’d be obliged to tell my sex partners, present and future, if ever I had a new sex partner, which I preferred not to think about.
I never really considered withholding this from my kids. But the thought that it was possible—that doing so could spare them worry—reminded me how much treatment had changed since Donnie died two decades ago. His diagnosis had been a death sentence. Now, treatment had advanced so that people have lived with HIV in good health for several decades. I was forty-nine. If HIV causes my death in three or four decades, well, then that’s how I’ll die. I would’ve lived a full life.
Having tested negative allayed Kay’s fears, yet nothing seemed fully resolved. She’d keep taking the prophylactics, keep getting tested, for months. She remained anxious. “I know, I shouldn’t think this,” she said. “But you’re older. You already have kids. I want that, too. I want kids, but if I’m sick . . .” I had no answer to that. My greatest fear was that I’d infected the woman I loved, denying her the life she might’ve lived.
But for our overriding fixation on HIV, the weekend progressed as any other. We watched movies. We putzed around the apartment. We went out to a nice dinner at our favorite local restaurant, enjoying the romance we had been denied on Valentine’s Day. On Monday, Kay returned to work, leaving me alone for the first time since the diagnosis. It was a relief, in some ways. “I’m sorry, you‘re spending so much time comforting me,” Kay had said. “I should be comforting you!” I replied, truthfully, that taking care of her helped me. I felt better and, through her feelings, more connected to our new reality. Now, I was alone with my own feelings.
I kept drifting back to Donnie. I remembered how often he apologized for putting us out with all the time and effort his care required. We told him to stop being foolish, we loved him and this is what love does. Yet it did envelop our lives and psyches. My time was divided between Donnie, school, work and my girlfriend Lucy. There were times I had to participate in major medical decisions—Donnie’s need for pain relief, his dread of becoming addicted to morphine, his apparent lack of understanding that any possibility of addiction would be dealt with by his imminent death. There were times I had to ask my boss for long lunches so I could race to feed Donnie’s cat, not facing my own lack of understanding that Donnie was never coming home. It was possible that I would be putting those who love me through similar demands, extraordinary and mundane, echoing Donnie’s lament of helpless apologies.
It was too soon to reveal my diagnosis. It was possible to keep it secret, to a point. I could spare my family some anguish. But my life has been too public for anything to remain fully discreet. If I told one person about my HIV, I might as well have told everyone. Gossip travels fast. The secret would be out.
Pondering my work as a sex educator—particularly in the immediate light of having canceled my presentations at a kink event—I felt it would be wrong to keep my status private. If my goal has been to be open and talk honestly, then I would be cheating myself by denying the truth to others. Perhaps my future, then, would be in educating myself and others that HIV doesn’t have to mean the end of one’s sex life.
I regretted facing the inevitable decriers, those who say that bisexual men are the highest risk in transmitting HIV between homosexuals and heterosexuals. That argument has been around since the beginnings of the AIDS crisis. It’s pernicious denigration, no worse for being untrue, and sex-positive advocates work hard to correct such stereotypes and misperceptions. And yet here I was, the very embodiment of that idea. I had publicized my bisexuality and hypersexual behavior, and now, I had HIV. I was living proof that my life and writing are unsafe examples. In this, my work may have done more harm than good.
Weekday routines focused us somewhat on getting through the days. We did our work, ate our meals, slept wrapped in one another. There were times we stared unproductively at blank screens, felt uninspired to cook, lay awake, talking.
Kay wept. I remained numb. We were waiting for the next step: the confirmation of my status.
Herbierto contacted me to confirm an appointment. It was a time Kay couldn’t join me. We would’ve preferred otherwise, but Herbierto said this was all they had and the appointment would take time. Kay and I would meet when she was off from work.
When I arrived, Herbierto ushered me into the lab and offered me a seat. He leaned against a counter.
“I’ve been doing this since I was thirteen and I’ve never seen this. Jefferson, your Western Blot came back negative. You do not have HIV.”
I was stunned. Of the swirl of questions taking form in my mind, the first I asked was, “You’ve been doing this since you were thirteen?”
Herbierto laughed. “Yes, I was a young activist and went into medicine to help people with HIV. Did you hear the rest of what I said?”
“Yes. But is it possible it’s a mistake?”
“No, it’s not. It’s even more definitive than ELEXIS . . .”
“And that was, what? Ninety-nine point eight percent accurate?”
“It’s a good test. But what it does is test for antibodies to the virus. Western Blot tests for the virus itself. A false positive with ELIXIS is very rare, though it does happen. Usually the subject’s immune system is in flux, like maybe they had a flu shot or they’re pregnant.”
“I haven’t had a flu shot,” I said. “And I’m pretty sure I’m not pregnant.”
“Sometimes, very rarely, it just happens.” He sat next to me. “This must be very confusing.”
I shook my head, disbelieving. “I had HIV for a week. But you’re telling me I don’t have it anymore.”
“That must’ve been a rough week. Yes, now we know you don’t. Now, just to be thorough, we’re going to run an RNA test . . .”
“Kay did that last weekend. It came up negative.”
“Good, I’m so glad. I hope it gave her some peace. We don’t usually run it here, because it’s expensive, but you’re a special case.”
“I look forward to an end to being special.” Herbierto ran the test. It confirmed my status: negative. We went to talk with the project director, to go over all the results and discuss how I felt on hearing them. I was urged to call if I had any questions or needed anything else.
“Oh, and one more thing,” Herbierto said as I prepared to go. “You get another twenty-five dollars for participating in the study.”
“This is the happiest twenty-five dollars I’ve ever earned,” I smiled, signing the ledger.
Outside, I called Kay. “I have good news and good news,” I said. “I’m negative. And they gave me another twenty-five dollars.”
“Oh my God,” she exclaimed.
“I know, right? We made a combined seventy-five dollars.”
“Jefferson, I can’t believe this. This is such good news. So unbelievable! Are they sure?”
“They are so sure. They ran Western Blot and RNA and just kept telling me. I’m negative.”
“Where are you? I’m leaving work. I’m so happy! I love you! God!”
That night, Kay and I had a second Valentine’s Day dinner. I thanked her for the roughest week of our lives. “I can’t believe how well you handled this,” I said, holding her hand.
“Yeah, by crying all the time,” she laughed.
“Sure, that’s natural. But honey, we went through all this, and none of it made sense. Yet you believed I was confused and not holding back information . . .”
“Well, I did doubt you. I mean, how is it possible?”
“Understandable, but . . . you let there be trust. When it was impossible.”
She squeezed my hand. “Because I love you.”
“And you never once, in all that, said we were finished.” I kissed her hand. “I have never, never felt this safe with someone. I love you.”
That night, we finally made love.
Finally, I cried.