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You, Me, and the Virus Makes Three: Serodiscordant Relationships in the Twenty-First Century

, by April Dávila

Howard and Terry

Boy meets boy. Boys fall in love. Boy tests positive for HIV.

It’s not your average story, but for many people it is perhaps a more accurate representation of how lives sometimes unfold in our chaotic world. Love can be exciting, unconventional, confusing, and sometimes even scary. Our emotions pay about as much heed to viral loads as Juliet did to her Capulet mother, but thankfully the modern narrative of serodiscordant relationships, wherein one partner has HIV and the other does not, has shifted from tragedy to romance.

Whether already in a long-term relationship or just noticing a glimmer of potential in a friend’s eyes, people living with HIV are exploring the questions surrounding love. What they are finding is that there are no right or wrong answers, no roadmaps to point the way. They can only follow their hearts and learn from those who have loved in the midst of this epidemic and lived to tell their tale. This is just such a story.

Terry is HIV positive. His partner, Howard, is not. Living and loving together for the past 26 years, they have been among the first to discover what it means to navigate a serodiscordant relationship. They have been doing so since before the term existed.

Love in an Epidemic

In early 1986, Terry Wilson was working as a waiter at an upscale French restaurant around the corner from San Francisco’s Opera House. A tall man with dark brown hair, his bright blue eyes sparkled with mischief that belied his 43 years. After finishing his time with the army in the ‘70s, he had settled into San Francisco’s gay community and enjoyed a wild and carefree decade.

But the free love sparked by the hippies across town on Haight Street came to a screeching halt in the early ‘80s, when gay men began falling prey to rare, opportunistic illnesses at alarming rates. By 1982 the term Acquired Immune Deficiency Syndrome (AIDS) had become a part of the national discourse, and by 1986 tens of thousands of cases had been reported. The world would never be the same.

Early in the epidemic there was little information as to how the disease was transmitted. Speculation and fear ruled supreme. Drinking fountains, hand shakes, and even friendly embraces were all suspect. The obituary section of the local gay newspaper, The Bay Area Reporter, grew to fill three quarters of a page, mostly with the names of young men. Roommates rumored to have the disease would come home to find their clothes on the front steps and the locks changed. Terry found himself living at the epicenter of the AIDS epidemic.

Like many of his friends, Terry reacted to the conflicting reports and rumors about AIDS by staying in more often, and having dinner with friends at home. While shopping at his local market one night that February in 1986, Terry bumped into his friend Keith, a kind-faced man with auburn hair that traced down along his chin to a full beard and mustache. Keith was cooking dinner that night for his friend Howard Dernberger, a bear of a man at 6’5”, with a high forehead and thick dark hair that gave him a rugged look. Keith suspected his two friends might hit it off and insisted that Terry join them.

Keith wound up left out of the conversation at his own impromptu dinner party that night. Howard and Terry were immediately drawn to each other, laughing and chatting as if they had known each other for years. After dinner they left Keith’s place and went out for a drink, then back to Terry’s small San Francisco apartment where they talked the night away. They discovered a shared love of classical music and jazz. Both were the youngest of three siblings. They had both served in the Army during the Vietnam War, and had subsequently come out to their families about their homosexuality after returning from their time in the service. Their lives seemed predestined to fall in step together. They just clicked.

At the time, Howard resided in Sacramento and commuted to the Bay Area to work on construction projects, but the long drive left little time for dates, so he soon began staying at Terry’s place in the city. They were very much in love, and by the end of 1987 they decided to move together to Sonoma County, about an hour’s drive north of San Francisco.

The Stone Spiral

The year that Howard and Terry moved north, over 43,000 cases of AIDS were reported in 91 countries. Officials all over the world were beginning to focus their efforts on education, to dispel the misconception that this was strictly a gay men’s disease, and to promote methods to prevent its spread. In Sonoma County, a group of artists was struggling to find a way to illustrate how the epidemic was impacting their own community. They felt it was important for people to see how the number of AIDS-related deaths was growing, to help increase awareness, address fears, and inspire communication about the challenges the disease brought to the community.

As part of the Art for Life fundraiser, an art auction benefiting the nonprofit AIDS support organization Face to Face, these artists created an installation. They placed three smooth, black stones, each about the size of a chicken egg, in the center of a round table to symbolize the first three people to die of AIDS in Sonoma County in 1983. A smooth piece of bone was laid next to those three stones, and 11 more were added to begin a spiral of stones, signifying the deaths in 1984. The trend of increasing numbers continued, and in 1987, the year Howard and Terry arrived in the area,, 34 stones were added. A year later that number doubled. In 1991, 107 stones were laid down, one of which symbolized Howard and Terry’s dear friend Keith, the man who had introduced them. They lost a lot of friends in those early years, but watching loved ones struggle with the disease never prepared them for what lay ahead.

Terry’s Diagnosis

In 1994 Terry visited his doctor for a routine physical. Aside from some persistent fatigue, which had been attributed to allergies, he appeared to be in perfect health, but the doctor noticed an elevated white blood cell count. By that time medical practitioners in the area had enough experience with HIV/AIDS to recognize symptoms worth investigating. He sent Terry to have a blood test, and for the three days it took to get the results, Terry tried not to think about it.

Despite being part of a high-risk demographic, he had always felt sheltered by his responsible behavior. He never considered himself promiscuous, and by the time he was tested, he and Howard had been together monogamously for eight years. The prospect that he had been harboring the virus unwittingly for so long seemed inconceivable. And yet, when the results finally did come in, he learned that the virus had launched a full-blown attack. With a CD4 cell count below 200 cells/mm3, Terry was diagnosed not just with HIV disease—he went home with an official diagnosis of AIDS. Though the distinction might seem semantic, the difference spoke to the battle raging inside his body. His healthy lifestyle (good diet, plenty of exercise) was likely the only explanation for his stable health up to that point. It was a minor miracle that his weakened immune system had not succumbed to an opportunistic illness already.

Still in shock from the news, Terry told Howard that night. He wanted to avoid being dramatic, but did not want to be dismissive either. He decided simply to state the fact: He had been diagnosed with AIDS.

Howard was stunned. He felt tears well up, but resisted the urge to cry. He knew Terry must be overwhelmed and did not want to add to his burden by overreacting. He tried to think of what to say but came up short, so the two just sat there, quiet, letting the news sink in. At that time an AIDS diagnosis was largely considered a death sentence. Among Howard and Terry’s friends, the end had usually come within months. Though there were treatments available, they seemed to only stall the inevitable.

It was shocking, terrible news, made all the more frightening by the reality of Howard’s exposure. They used condoms at the beginning of their relationship, but the precautions fell by the wayside when they committed to being monogamous. Despite almost certainly facing a similar diagnosis himself, Howard’s concerns were exclusively for Terry. The way he figured it, dying would be easier than losing Terry. Without Terry, he did not want to live.

Moving like a man disconnected from himself, Terry went through the motions that night: eating dinner, brushing his teeth, going to bed. Howard waited until Terry was asleep, and then finally allowed himself to feel the fear that had been building in him. He went into the bathroom and cried. Crouched on the floor with a towel over his face, the crying became heaving sobs that shook his giant frame.

Terry came in and asked what was wrong.

Howard almost laughed, but then quickly sobered. “What are we going to do?” he asked. “What are we going to do?”

There were no easy answers. Terry took Howard by the hand and the two went to sleep.

Howard’s Diagnosis

The next day at work, Howard made an excuse to leave and get a blood test of his own. He confided in one friend at work, whose brother had died of AIDS, but otherwise kept quiet. He felt it was his and Terry’s private business, and was unsure how people would react. Three days later he devised another excuse, and went to get his results. Terry went with him, but waited outside the clinic in their Datsun 510 station wagon.

Inside, Howard sat down with a nurse who held a three-by-five note card with the results of his test. Howard assumed he was positive. There seemed to be no other possibility, after almost eight years of unprotected sex. As far as he was concerned, this was a formality.

The nurse flashed the card and said simply, “You’re negative.”

Surprise washed over Howard. He was negative. He felt relieved and elated. Joy overtook him for just a moment before he thought of his partner sitting out in the parking lot, waiting for him.

Back outside, Howard told Terry the news and watched as Terry’s whole body relaxed. For Terry, one of the worst parts of his diagnosis was the possibility he had given it to Howard. He could put those fears aside. There was no jealousy or self-pity; he felt only relief that his love had been spared.

The fact that Howard had never contracted the virus was confounding. Their doctors explained that some people just do not catch it. (Scientists have since identified a genetic mutation that at least partially protects some people from the virus.) Or perhaps it was just dumb luck that the virus had never made the jump between them. They would never know, and would never need to. What they needed to do at that point was figure out how to keep Terry alive.

The Spiral Grows

In 1994, the year of Terry’s diagnosis, 110 smooth black rocks were added to the stone spiral in Sonoma County. According to the World Health Organization, an estimated four million cases had been reported worldwide, up 60% from the year before. Federal data showed that AIDS had become the leading cause of death for Americans between the ages of 25 and 44.

Though the disease was better understood than in the ‘80s, there was still no truly effective way to treat it. At the time, the only treatment available utilized the chemical compound azidothymidine, more widely known as AZT. Though many people living with AIDS found that the drug made them terribly ill, until June of that year it was the only approved HIV medication on the market and the best treatment option available.

Treatment Begins

Terry was very proactive after his diagnosis. He asked many questions and was highly involved in his medical care. He did everything he could to keep his spirits up. He had seen too many people slip into despair after an HIV/AIDS diagnosis, and was convinced that to do so was counterproductive. He knew he might not beat this thing, but he sure as hell wasn’t going down without a fight.

And fight he did. Ironically, starting on AZT in 1994 marked the initial decline of Terry’s health. He lost weight rapidly. He was exhausted all the time. He continued to work, doing interior plant maintenance, but by dinner each night he was so drained he was barely able to hold his head up. He went to bed early and rested often.

On his end, Howard did everything he could. Unable to affect Terry’s health directly, he focused instead on maintaining their lives together. He cooked, cleaned, and took care of the cats. They were living in a small home in Occidental, California, that had little insulation against the cold. The winter that year was particularly frigid and as Terry’s weight dropped, he had trouble keeping warm. To heat the place, while still saving money for Terry’s AZT treatment, Howard brought home wooden pallets from the construction site where he worked, broke them up, and fed them into the small potbellied stove in their bedroom.

The question of why Howard had not caught the virus was pushed into the background. As Terry grew increasingly sick, the logistics of their sexual interactions became irrelevant. They were intimate in other ways. Howard made them elaborate meals, they watched movies, and whenever Terry would allow him, Howard snapped photos to capture what he assumed were their last days together.

As cold as it was, their home in Occidental was fortunately close to the Sonoma County HIV Clinic, one of the first health care facilities established exclusively for HIV-positive individuals. It was there Howard and Terry found Dr. Anna Baylor, who would become their ally in their struggle against the virus.

Sharing the News

With Dr. Baylor’s help, Howard and Terry found a rhythm with Terry’s treatment, and soon decided they wanted to share what they were going through with their family and friends. They knew the road ahead was going to be rough, and they quickly learned that Terry’s illness would be hard to hide, even if they wanted to. More than that, they knew that their community would be there for them when they needed help. The only choice, as they saw it, was to be open about what they were going through.

For Terry, part of the motivation to tell family and friends was the fact that he never did know how he was infected. Two former lovers died of the disease without ever telling Terry they were sick. He learned of their deaths by word of mouth, and never knew how long they were infected. Determined not to harbor resentments, Terry instead felt a deep disappointment that men he had been so intimate with never confided in him. He knew that dealing with AIDS in secrecy was not something he wanted to do.

At first sharing the news was a dramatic event. There were tears, and long embraces, but before long they grew practiced at it—which turned out to have its own pitfalls. After letting the news slip with nonchalance at a cocktail party one night, they spent the rest of the evening trying to coax their host out of the bathroom where she had locked herself in to cry. Howard and Terry learned that timing was everything. Yes, it was important to share what they were going through with friends, but it was also essential to choose their moments wisely.

The longer Terry survived, the easier it became to talk about his health. Slowly, it became just another part of his life. It was something he dealt with, and took seriously, but over time the couple began to realize that they might have more time left together than they had originally thought.

New Hope

Nationally, a newfound optimism worked its way into the discussion of the fight against HIV/AIDS when the Clinton Administration convened the first-ever White House Conference on HIV and AIDS in 1995. The result was a new strategy for fighting the disease, including funding for research, outlawing discrimination against people with HIV/AIDS, and working toward reducing the number of new infections.

In 1996, 70 stones were added to the spiral at the Art for Life event. HIV infections were still being diagnosed throughout the county, but educational programs and federally supported health services helped the local HIV/AIDS clinics keep people healthy.

The following year, the number of AIDS-related deaths in Sonoma County dropped again, to 26. With the introduction of new drug classes that targeted different stages on the viral life cycle—a breakthrough that came to be known as highly active antiretroviral therapy, or HAART—doctors and patients were able to tailor treatment regimens toward suppressing the reproduction of the virus and slowing or stopping the weakening of the immune system. CD4 cell levels were kept high, and many people lived with HIV without ever being given an AIDS diagnosis.

A Fight for His Life

In 2003, a new drug appeared on the market called T-20 (also known as enfuvirtide or Fuzeon), and as he fought for his life, Terry was willing to try anything. To be administered, the Fuzeon powder first had to be mixed with sterile water from a separate vial and allowed to sit for 20 minutes. If in that time the drug fizzed, the batch was bad and the process had to be repeated. Once the dose was successfully prepared, it had to be injected subcutaneously. This procedure had to be performed twice daily, with the drug injected into a different location on the body each time. The problem was, Terry’s tortured body had almost no subcutaneous fat to speak of.

Terry enlisted Howard’s help administering the drug, but Howard had a fear of needles and the routine was almost more than he could handle. He would mix the medication, wait the prescribed length of time, and load the syringe. Then his big, burly hands would begin to shake. He could build a dress shop from the ground up, or install custom cabinetry without breaking a sweat, but trying to find a fleshy spot on Terry’s body that had not yet been used as an injection site turned Howard into a pile of nerves. Holding his breath, he inserted the needle. Terry jumped. Howard jerked. Terry balked. Howard quickly hit the plunger and they were done—for the next 12 hours, at least.

This was a low point for Howard. The Fuzeon was the only thing keeping Terry alive, but administering it was a strain on their relationship. After a while Terry decided that although giving himself the shot was difficult, it was harder to go through the process with Howard twice a day. He took over, and Howard was thankful to be relieved of the duty.

Eventually Terry came home and announced that Dr. Baylor had recommended stopping the Fuzeon. Howard literally threw his hands in the air and yelled with joy. There was a new treatment they were going to try. Not long after that another drug regimen came along, then another. Terry felt like a guinea pig. He was among the first to try just about every new drug that gained any credibility. It was exhausting. His body was stressed and thin, and looked like he had been put through a wringer, but he was still alive nine years after being diagnosed, which was more than the couple had dared hope for in the beginning.

By this time, Howard and Terry had moved to Rio Nido, California. A resort community on the Russian River, this small town of just 522 permanent residents is little more than a long canyon of towering redwoods with shafts of light pouring down through the canopy. They bought a two-story home above the flood line, with a workroom on the ground level for Howard. For years, in addition to his carpentry work, Howard had been making lamps from found objects such as antique coffee percolators, fencing masks, and old musical instruments. These unique, fanciful creations sold throughout the art community of Sonoma County and were featured auction items at the Art for Life fundraising event where the stone spiral commemorated the region’s ongoing battle against HIV/AIDS.

Terry’s health was up and down, depending on his reaction to each successive treatment. When the nursery he was working with closed its doors, he decided to open his own shop in Occidental, specializing in interior landscaping and one-of-a-kind gifts. He named it Verdigris, reflecting the lush forests of the surrounding hills, and catered to the crowds up from San Francisco on the weekends. Tucked in between the delicate wind chimes and playful garden decorations on the shelves were Howard’s distinctive lamps. Part antique, part structural collage, they quickly became popular with collectors. Things were going well.

Then one morning in 2006, Terry was getting ready to drive to the city for a doctor’s appointment. He was standing in the kitchen when he suddenly lost his balance. He stumbled, knocked a plate to the floor, and collapsed. Howard was still in bed when he heard the crash and came running up the stairs. Terry was conscious, but groggy. Howard quickly took him to Warrick Hospital in Santa Rosa.

The doctor on call ordered a lumbar puncture, which confirmed that Terry had contracted cryptococcal meningitis. A fungal infection of the membranes covering the brain and spinal cord, cryptococcal meningitis is considered an opportunistic illness in people with HIV. Such illnesses, including pneumonia and tuberculosis, are rarely fatal in people with healthy immune systems who receive proper treatment, but for immunocompromised individuals like Terry, the diagnosis was dire.

While the physicians at Warrick Hospital did everything they could for Terry, Howard met with Dr. Baylor, Terry’s doctor from the Sonoma County HIV Clinic. Sitting in front of Terry’s file, a stack of papers four folders thick, she told Howard to prepare for the worst. There was a good chance Terry’s immune system would be unable to fight off the infection. If that was the case, there was little that could be done to save him.

For days Howard sat beside Terry’s hospital bed, not knowing if they would ever go back to their home in Rio Nido together again. As he had so many times before, Howard braced himself for what appeared to be the imminent loss of his long-time partner. The machines beeped and whirred around Terry, and after three days in the hospital, he had survived the worst of the illness. Two days after that, Howard was allowed to take him home. Slowly Terry regained his health, and eventually he returned to his regular routines, having survived against the odds one more time.

Once the cryptococcal meningitis episode passed, Dr. Baylor informed Terry of a new drug regimen she wanted him to try. It was still experimental but seemed promising. It involved eight pills, twice a day.

Terry was, as always, diligent about taking his medication, and on the new pill regimen, his health steadily improved. By combining his treatment with a healthy diet, vitamins, and exercise, he further stacked the odds in his favor. He regained some weight, and felt stronger. Months went by and the infection that nearly claimed his life began to fade into memory. Months became years. It appeared that Dr. Baylor had found the right cocktail for Terry. The side effects were minimal and the virus seemed to be under control. Seven years later, his viral load was undetectable.

New Challenges

Terry’s diagnosis came at a unique period in the history of HIV/AIDS. It was late enough that treatments were becoming available, but early enough that most people, including his doctors, did not expect him to live very long. For 14 years his health care was exclusively focused around the treatment of his AIDS, ignoring the potential for other serious illness. So his doctors were taken completely by surprise when they discovered in 2008 that he had prostate cancer. For all the blood tests he had undergone over the years, none of his doctors had ever ordered the prostate specific antibody (PSA) test used to detect the disease.

Howard was again faced with the prospect of losing Terry. The couple had some hard decisions to make. Recent studies had shown that only a small percentage of men actually die from prostate cancer, but there was no way to know whether Terry’s case was potentially fatal or not. The radiation therapy used to treat the cancer would be hard on Terry’s immune system, making him even more susceptible to opportunistic illnesses like the cryptococcal meningitis he had fought two years before. Howard and Terry discussed the options ahead of them and decided that after fighting so hard to survive AIDS, it was irrational to acquiesce to cancer. When the head of urology at the University of California at San Francisco recommended that Terry go ahead with treatment despite the potential risks, it was settled.

Terry underwent the radiation therapy, despite conflicting advice from other doctors. The fatigue returned, and there was doubt as to whether they had made the right decision. Howard, who had watched Terry’s struggle to regain his health from AIDS, fell back into his caretaker role as Terry’s body was again ravaged by treatment side effects quite possibly worse than the disease. Eventually they won this battle, too. Terry’s cancer is now in remission and undetectable by the PSA test.

The Fight Moves On

The stone spiral added just nine new rocks in 2008. HIV/AIDS is no longer a death sentence for those with access to antiretroviral cocktails. Worldwide, the number of HIV infections, as well as AIDS-related deaths, has begun to fall. However, in some areas, especially in sub-Saharan Africa, the fight to provide medication is not always successful.

Organizations such as the World Health Organization, Doctors without Borders, and the Global Fund are fighting to educate people about HIV prevention and deliver treatment for those struggling to survive. Dr. Baylor, Terry’s doctor at the Sonoma County HIV Clinic before it closed down due to a dwindling client base, continues the fight in Uganda where she is now the Program Director at the Mbarara University of Science and Technology.

Home Together

In February of 2012, Howard and Terry celebrated their 26th year together. Though Howard still tests negative for HIV, they have never assumed he is immune. Now that Terry’s health has improved and they are able to be intimate sexually, they take precautions to protect him, but these days the couple is much more focused on the shared experience of aging. They deal with arthritis, pinched nerves, Howard’s knee replacement surgery, and the remission of Terry’s cancer. Though not legally joined (that’s a topic for another article), they act every bit the old married couple, playfully bickering over the details of their history and feeling tremendously lucky to still be together.

“Everybody’s got baggage,” Howard said, when asked what it is like to be part of a serodiscordant couple. “If you care enough about the person, nowadays it’s really not that much of an issue, as long as the person is responsible about taking their drugs and you’re relatively careful when you have sex. Other than that, it’s like bad breath or wearing glasses.”

In 2010 only two stones were added to the spiral, down from its peak of 113 in 1993. Face to Face continues to host its Art for Life fundraiser every year. The proceeds go toward improving the lives of people affected by HIV and to reducing the number of new infections. They continue to display the stone spiral as a memorial to the friends and loved ones who have been lost from their community along the way, and work diligently toward the time when no more stones will be added, when no more lives will be claimed by AIDS.

Navigating Serodiscordant Partnerships

Howard and Terry’s experience as a mixed-HIV-status couple was unusual: Having been together for eight years before the diagnosis, and not intending to have children, they were well positioned to deal with the stress that the AIDS diagnosis brought with it. If you find yourself in a newly diagnosed serodiscordant partnership, or are considering entering into a relationship with someone whose HIV status differs from your own, there are several steps you can take to manage the transition.

  • Make communication a priority. Be sure to discuss if and how you plan to tell family and friends about your (or your partner’s) HIV status. Share your feelings about what you are going through with your partner. Consider seeking professional counseling, especially if the HIV infection is a result of sex outside a non-open relationship.
  • Remember that you love one another. The challenges of HIV are both physical and mental. Recognize that even though only one of you is infected, both of you will have ups and downs. It is important that support and care be equally given and received.
  • Keep things in perspective. HIV is a manageable disease. If you are the positive partner, be sure to take your prescriptions as directed, and maintain an optimistic outlook. Make time to enjoy life with your partner.
  • Stay safe. If you decide to be sexually active together, take precautions. Condoms have long been recommended to prevent infection. In addition, recent studies have shown that a strategy called pre-exposure prophylaxis (PrEP)—in which HIV-negative people take the same drugs as people on treatment for HIV disease—helps prevent HIV infection. [Update: In July 2012, the U.S. Food and Drug Administration approved the antiretroviral drug Truvada as as PrEP for people at high risk for HIV infection.] And new research shows that having an undetectable viral load on effective antiretroviral treatment tremendously reduces the risk of transmitting HIV to an uninfected partner. Also, don’t forget that there are many ways to be intimate. Challenge yourselves to find new, fun ways of being erotic together, and make space for other kinds of intimacy.

 

April Dávila is a freelance writer based out of Los Angeles. To learn more, visit her website at aprildavila.com.

Selected Sources

Anderson, A. and others. Intracellular tenofovir-DP concentrations associated with PrEP efficacy in MSM from iPrEx. 19th Conference on Retroviruses and Opportunistic Infections (CROI 2012). Seattle. March 5–8, 2012. Abstract 31LB.

Baetan, J. and others. ARV PrEP for HIV-1 prevention among heterosexual men and women. CROI 2012. Abstract 29.

Cohen, M. and others. Antiretroviral treatment to prevent the sexual transmission of HIV-1: results from the HPTN 052 multinational randomized controlled trial. 6th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention. Rome. July 17–20, 2011. Abstract MOAX0102.

National Center for Health Statistics. Annual summary of births, marriages, divorces, and deaths: United States, 1993. Monthly Vital Statistics Report 32(13). October 11, 1994.

World Health Organization. Guidance on Couples HIV Testing and Counselling, Including Antiretroviral Therapy for Treatment and Prevention in Serodiscordant Couples. April 2012.

World Health Organization. The current global situation of the HIV/AIDS pandemic. Press release. July 1, 1994.

 

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