Part 7: KT – Fighting the Best Fight

You know how sometimes you meet people for the first time and there’s something there that just CLICKS? That was how it was when my husband met SC for the first time. Soon after, SC invited my husband and I over to his house for dinner with him and his partner KT. Their beautiful home was adorned with stunning canvases that KT had created. A professional artist whose work is in high demand and displayed in luxury hotels, corporate head quarters and high-end galleries, KT gave us the tour of his walls and we were stunned by his talent. But more importantly, that night we realized how much in love SC and KT were.

These were two highly committed life partners who’d been together, at that time, for more than 15 years. And the four of us got along brilliantly. We saw them with some regularity, often joined by another couple of friends. It was at dinner one night at these mutual friends’ house that I saw KT taking A LOT of pills and talking about the health benefits of eating kelp. When I asked, a little uncomfortably, what the pills were for, he responded, “They keep me alive.”

My husband and I didn’t realize that KT was HIV positive until that night. Over the next year, we learned how KT and SC hadn’t had sex with fluid exchange for many years, and that SC was HIV negative. This aspect of their monogamous relationship certainly didn’t appear to affect the love and devotion that they clearly felt for each other.

We also learned that KT was one of the earliest diagnosed HIV patients in North America, and continues to be one of the world’s longest living survivors. This is in large part due to an incredibly positive attitude. KT is determined to fight this disease with every fiber in his being, to live with passion and to care for his body the best way he can.

This care takes its toll. He is committed to working out ever day, cycling year round, monitoring every piece of food that enters his body and ensuring that not only his he getting the best nutrition but also that he is eating foods that have beneficial immune-boosting properties. At the time when we saw him popping medication at the dinner table, he was taking 80 pills a day.

But the wicked thing about HIV is that at some point, the drugs stop working and you’ve got to try another combination. Having a good doctor is key to your survival. It was about 3 years ago when KT’s health was in rapid decline that his doctor, one of the world’s foremost experts on HIV, told him about some new drugs that were being tested in another country but weren’t yet approved for clinical trials in ours. He and his doctor mounted a campaign with the government to allow KT to take these new drugs. The government argued that taking the treatment had not yet proven to be safe. KT and his doctor argued that he’d exhausted all other treatment options in the 22 years since he was first diagnosed with HIV, and that if he didn’t take the new drugs, he’d be dead within months. They won their challenge and the new drugs saved his life.

Now, 25 years after contracting HIV, KT is looking fit and healthy. He and SC are still in love and together. They married and have been together more than 20 years. Who knows how long KT will be with us, as he brings us more incredible art and a brilliantly positive light into the lives of all who know him? But, I can say, that KT shows us all how to fight the best fight.

Part 6: KL – Damages

Our friend KL is living with HIV. He and my husband became friends through work about 6 years ago. Although they’ve both moved on to other places, they’ve stayed in touch and see each other for lunch every other week, and sometimes they’ll go to the Village to check out stores and have dinner.

KL has two sides to his very strong personality. On one hand, he’s the sweetest, most sensitive man who cares deeply about art, the creative process and also for my family. He’s the type of guy who would give you everything he owned if you needed it. On the other hand, he can be a total bitch. Unprovoked, he can say mean and spiteful things to my husband or other people in his life. At times, it’s as if he’s intentionally trying to push people away from him. He’s cultivating a hard shell.

We’ve tried asking him about his HIV status and his health. KL doesn’t want to talk about it. He also doesn’t want to talk about the all medication he takes, though has mentioned how thankful he is for the medical insurance he receives through his job. If we ask him how long he’s been living with HIV, he will say something glib, then change the subject.

But there’s a bigger problem. Through stories about hook-ups KL has had, we’re quite certain that he is not immediately open about his health status with many of his lovers. I have an ethical and moral issue with this, as does my husband. With him being so closed about his HIV status, it makes it very difficult to approach him to discuss it.

I asked my husband if it was any wonder why KL couldn’t keep a boyfriend when disclosure came sometimes weeks after having sex for the first time. My husband corrected me by saying that, in almost all of the cases, it was KL who would cut off the relationship and push the other person away.

My husband is acutely aware that he is likely one of KL’s closest friends. Sadly, no one sticks around him for long. But my husband has a way of dealing with KL’s acid tongue that works for both of them. He thinks that KL is an intensely lonely man who, in order to protect himself from being hurt, intentionally lashes out at people first before he has the chance to be hurt in return.

It’s easy to be righteously indignant about KL’s reprehensible behavior where HIV disclosure is concerned. It would also be easy to tell him that if he didn’t conform to what we, and much of society, felt was morally and ethically correct, we could no longer be his friends. But the reality is, looking at the patterns of his past relationships, KL might just as easily cut us out of his life in a move of emotional self-preservation, and then continue doing what he’s been doing all along.

Instead, my husband and I have decided that we’d make more of an impact by trying to effect an attitude change from within the friendship, and to show a little more compassion and a little less judgment. I don’t know if we’ll be successful – on any of those points. And yes, I do think of all the men that KL has put at risk without their knowledge, I wonder if any of them are now HIV positive as a result and I wonder how much of that weight rests with me.

This is not a redemption story. Yet.

Part 5: GB – Most Likely To Succeed

Dear GB was one chic man. He aimed high and was an overachiever. He started his own business when he was 16 and by the time he was 18 had several employees. Consequently, he was always the one with money and a car and a great designer apartment in a cool neighborhood. He hung out in the gay clubs and ran in the same circles as me. Always polite, always a spectacular dresser, always very, very refined.

He introduced me to my first serious boyfriend, a man whom I would live with for many years. GB, however, was very private about his love life. Although he was openly gay, even with his parents (which was rare in my circle at the time), he was pretty tightlipped about any brief affairs that he may have had. Until one day GB met Bill, a young beautiful man, and they fell deeply in love. Soon they were living together and throwing lavish and stylish parties. Perhaps he was 20 or 21 years old at that time. GB and Bill were together for several years like well-matched, impeccably lovely bookends.

Over the years I lost touch with GB, as did my dearest friends who were also friends with him. I heard that he and Bill had broken up and that GB was in another long-term relationship. Then, one day GB found me. He had seen media coverage of a work event and recognized me. He called me and we caught up on 10 lost years. He told me of how I was now living in the city he’d recently left and of how he’d started and sold several businesses that now afforded him a rather comfortable lifestyle. He had a house in the tropics and one in a well-to-do part of our hometown. And he told me of how he had been with another partner, Alan, for the last 5 years and how much in love they were. It was wonderful to hear how happy he was and how well he had done for himself.

We pledged to stay in touch and see each other the next time we were in the same city. I called my dearest friends who knew GB and told them about our call. Everyone was pleased to have news of his good fortune. Then, as sometimes happens, busy lives take over and good intentions get lost to the demands of navigating your day-to-day life.

Two years had passed when my friend R called to say that GB had died. She had tried to find him online to call him for his address in order to send him a Christmas card. Instead, she found his obituary. Although the cause of death was not listed, donations were requested for an AIDS hospice in lieu of flowers. GB was 35 years old. One of us tried to find his parents for more information, but was told that they too had passed away. I tried to find Alan, but without his last name, that was futile. And so it remains a sad mystery that we’ll never really know what happened to this driven, vital and oh, so gentle man.

Part 4: CD – True to Her Love

In my group of misfit-creative friends in high school was CD. She was a year older than me and was also a childhood friend of my buddy DV. CD was very artistic and extremely knowledgeable of a wide range of music. She was a staple at all the parties and in the alternative scene at the time. She loved her tribe of foundlings. CD was quirky, intelligent, fun and was known to not hold her liquor too well. But she was always polite, apologetic and slightly embarrassed about it, even when inebriated.

After high school, she went to college and we started hanging out in different circles, leading our own semi-adult lives and I didn’t see her too often. DV, however, remained in regular contact with her and would convey the “say hi to CD for me” messages on my behalf. CD fell madly in love with a guy, married him and had a child. While still in her early 20’s, she was one of the first people in my circle to have a child. According to DV, she and her husband had moved back into the old neighborhood and she loved being a mom.

Fast-forward12 months. It had been a very bad year for me, filled with a major depression and the very painful break up of my relationship. During that time I had withdrawn from many of my friends and had made only occasional contact with DV. He called to tell me the terrible news of the previous months.

CD’s husband had been sick in the hospital and the doctors wouldn’t give her any answers about what was causing this sudden severe illness. He died quite quickly. Afterward, the doctors finally told CD that it was AIDS. She was shocked and wondered how her husband had contracted HIV. None of the plausible answers were very comforting.

Shortly after her husband’s death, a 26-year-old with a baby at home, CD tested positive for HIV. Knowing that she might not have much time, CD set about making arrangements for who would raise her child after she passed away. Just like her husband, the disease took her very quickly. Their child had lost both parents to AIDS within 18 months. He was not yet 3 years old.

Part 3: MD – Enigmatic

In high school I had a core group of friends who were eccentric creatives. They were intelligent, fiercely independent and anti-establishment. My first big crush was on DV and we were (and still are) good friends. He fooled around with other girls but never with me, and for a while, I was hurt, until senior year, when DV and the vast majority of my male friends came out as gay. DV told me, just a few years ago, that he never wanted to “experiment” with me because he adored me and never wanted to hurt my feelings.

DV’s best friend was MD. They played in an alt-band together and I don’t think I ever missed a show. The year of the “Out”, MD was amongst my group who also openly declared himself as gay. MD and I sometimes had a strained friendship. Perhaps a part of him may have felt jealous of my close friendship with DV. Then again, it’s also possible that he was just trying on an abrasive personality from time to time as part of teenage development. In other words, maybe he was just a prick on occasion.

Nonetheless, we were friends and well after high school we’d see each other when the gang would gather for drinks. When I moved overseas, I’d send MD Christmas cards and get news of him through DV. I didn’t know too much about what he was up to, other than he didn’t have a steady partner and he was living downtown in the gay village. Even his friendship with DV was full of spats and episodes of MD being a prick and there were times they wouldn’t communicate for a few months.

Then, one day DV called me to tell me that he had just learned that MD had died of AIDS. DV didn’t even KNOW that MD was HIV positive, let alone sick in the hospital. His friend since childhood was dead at the age of 24, and he never got to say goodbye. DV explained that just a few weeks earlier MD had decided to give away all of his possessions, and had insisted on giving DV his entire record collection, despite protests. Still, in DV’s mind, nothing really clicked that something was wrong. MD was just being, well, MD. He had always been prone to eccentricities and radical decisions.

What saddened DV the most was that MD died alone. He didn’t tell anyone that he was HIV positive. From as much as DV could gather, he wasn’t even under treatment for it. And like many of our group at the time, MD had not yet come out to his parents or siblings. So, when he got ill, he just decided to let the disease take him. True to his alt-rock convictions to the very end, he must have felt it was better to burn out than to fade away.

Part 2: JP – A Smile and a Spark

I knew JP through work. He was cool, older than me, quite Out, sported amazing ink before it was mainstream and wore leather. I liked him instantly. He was kind to me, and a sweet and gentle soul who was unafraid of living his dreams. He had humble beginnings but worked hard to rise in his profession and achieve success. He decided to trade in his vanilla work and move overseas to the same city I was in to pursue a new adventure. He was alone in the world: parents dead, no siblings, no extended family to speak of, no steady partner. I was the only person he knew in town, aside from a few casual friendships he’d made. So, when he fell ill and landed in the hospital, I was the one he called.

I didn’t know he was HIV positive until I went to see him. Then, I discovered that he was very ill indeed. He was in the AIDS ward – yes, they had an entire ward for AIDS patients then. There was so little information about the disease back in 1988 that we didn’t even know for sure how one contracted it. The drug prescribed then was AZT. It was harsh and only worked for a limited time until the virus resisted it, and then you were on a clock. There were few alternatives.

And so, two or three times a week, I would visit JP in the AIDS ward. I’d leave work and travel 45 minutes to the other side of town to bring him some music and sit beside his bed. We didn’t talk much about his health. We made idle chitchat and talked about bands, but never about the future. He was just happy for the friendly face and the company. I remember not knowing if it was safe to hold his hand. No one really knew at that time if there was a risk of transmission through sweat. In the end, I held his hand and gently hugged his frail body. To not do so, felt cruel.

I later learned that one of the most painful things for AIDS patients, then and now, is the lack of simple, compassionate physical touch.

The AIDS ward was grim. Maybe it was just a result of being in a very old building, but the effect was there, nonetheless. I have strong memories of patients in blue pajama pants; their gowns open in the back, pulling their IV stands up and down the hallways, shuffling their feet, always alone. I rarely saw visitors there. The patients in this part of the hospital were all male, and many of them had gaunt cheeks that made their eyes appear slightly bulging; the textbook look of someone in the advanced stages of the disease.

I didn’t tell my workmates about my JP’s true condition. It carried too much fear and stigma. Instead, I simply said I was visiting a friend with pneumonia in the hospital.

After four weeks, he was released from the hospital; his current health crisis averted, and was able to return to his apartment. JP was weakened and had a home care nurse to check on him daily. He decided to return home to be with friends. I only saw him once more before he moved, and he was very sad. The joy and spark for life that he’d had before his pneumonia was now gone, replaced by depression and worry.

I used to call overseas to speak with him on the phone. He was living with his old boyfriend but the sadness had not left him and he was hesitant to speak of the future, despite my eternal optimism. The last time I spoke with him was nine months after he returned home, on New Year’s Eve, and he was crying. He was not strong enough to go out and was very upset that everyone had gone out to celebrate, leaving him alone at home. It was clear in his voice that he was desperate and felt abandoned.

Three weeks later, I received a letter from his friend telling me that JP had died. There was not much detail in the letter about the specifics of his death, but tucked inside was a memorial card with a black and white photo of JP, smiling that cheeky grin, eyes twinkling with mischief, full of life. That is how I’ll always remember him; happy, and grabbing life by the balls.

As an underage party girl hitting the nightclubs in the early eighties, my friends were a curious mix of gay men, punks and those on the fringe of society. Viewed as social outcasts and misfits by mainstream culture, we formed tight bonds to protect ourselves from the abuse regularly hurled our way. Between the ages of 23 and 26 I lost four friends to AIDS. Another passed a few years back. And there are two newer friends who are survivors, living with HIV in very different ways.

These are their stories. It’s a reminder about the lack of knowledge and prevailing attitudes at the end of the eighties. It also shows how far we’ve come, and it’s not all good. But mainly, this is a celebration of my love for them.

Part 1: WR – Young Love

My first boyfriend was affectionate and sweet. We made out, held hands, hugged and went everywhere together. We shared the same warped sense of humor and taste in music. After a few months, I wondered why things weren’t moving along for us physically. That is when he confessed that he was having sex with boys he’d pick up on the subway. Strangely, even after this revelation, we didn’t break up for another several months. We so cared for each other, that we didn’t want to lose the special connection that we had.

I loved WR and we remained friends for years. When I moved overseas in my early twenties, he wound up in the same city a year later. We didn’t see each other very often. He lived more than an hour away and we both worked long hours. He would stay out at gay clubs dancing until the wee hours. I lived a quieter life, writing and taking classes, commuting to the suburbs on the train and trying to get by on a meager wage. About 6 months before I decided to move back home, he told me he was HIV positive.

He didn’t want to talk about the details of it. He’d had it for some time but felt good. WR looked healthy, in top form and good humor. But, upon coming out about his condition, many of his friends had abandoned him and he felt hurt and betrayed by that. He had yet to even tell his parents that he was gay, let alone tell them that their only child had HIV.

I moved back to my hometown and we kept in touch through letters and the occasional phone call. A year later, I received a letter from WR’s boyfriend advising me that he had died a few weeks before. I had no idea that he had even been sick and I was shell-shocked.

His boyfriend knew nothing about me, but found the letters that I’d written to WR over the years. It was clear to him how much WR and I cared for each other and he felt compelled to write to me with the grim news. He said that WR had died peacefully and that he was by his side at the end. He was 25 years old. In the final stages of the disease, WR made his own square for an AIDS quilt. I have no idea which quilt or where it is. I don’t know if he was buried or cremated. I don’t know if his memorial is over there or over here. I wrote to his boyfriend and never had a response.

WR’s parents were elderly, even then, and I never spoke with them about him before they died. I was afraid to mention something that perhaps WR had not told them before he passed. And I didn’t want to bring them any more pain. WR remains a beautiful memory, with nowhere to lay flowers.