I have been living with HIV since June of 1986. That was when I became the sickest I have ever been in my entire life, before or since. That was when I "sero-converted". It was also about five or six months into a relationship with a man I cared very much for. His name was Alexander. I called him Alex. In the beginning, Alex was good to me. Very dear, very kind, easy going. At the time I felt lucky to have him. I was recovering from a violent family suicide in 1981. My father had shot himself in my presence. I was a very fragile person back in 1986. I needed a lot of TLC. I needed a lot of trust. I thought I had found it. I was wrong.
When I started into the relationship with Alex I had an intuition that told me to ask him if he was bisexual. I don't know what made me think to ask this, but something inside said I just needed to know more about his sexual orientation. So I asked. He didn't tell me the truth. I guess he thought I would reject him if he said yes. He said no. It was 1986. Women didn't get AIDS in 1986, right? We both were tested when he began having on-going episodes of thrush that would clear up with antifungals then reoccur within a week or two. His result came first, and when it did I was with him. The doctor had phoned him at home to tell him. I knew the news was bad because I watched him crumple on the bed as the information reached him. It was like watching the air being let out of a balloon.
We were so alone. There was no one to help us. I did my best to reassure Alex, but I could only do so much. I could only try to explain to him so many times that I thought we could be okay before it sounded empty to him. I had a hard enough time convincing myself, but that was something I absolutely, positively had to do in order to stay sane.
When my positive diagnosis arrived, I too was devastated. I drove up to my doctors office to see what I should do. She too had told me my results over the phone. I wear prescription glasses. I grabbed the first glasses I could find on my way out the door, they were sun glasses. When I got into her office she looked at me and, in a not so friendly tone of voice, said she didn't speak to people who wore dark glasses in her office. I guess she thought I was trying to be melodramatic. So I took them off and began my initiation into the world of doctors and AIDS. It went form bad to worse and has only just begun
Fear and Pain
There are levels of fear and pain I have endured through this experience that I want to expose and release. I don't know how I am going to make the changes so they are effective in reality and genuinely helpful to my desire to move forward. It's going to take some time. I have to say that for the first five years of this experience I was in total hiding. I hid until I could no longer bear the life I was living.
Alex had turned to drinking in order to cope. I had turned to a fanatical form of determination that said I would live and anyone who tried to tell me otherwise had better get the hell out of my way. I believe my determination is what saved me. My feeling was that I did not bloody well survive the agony of my father's suicide only to have my life snuffed out by AIDS. In my mind, it just wasn't going to happen, virus or no virus.
It was Alex's drinking that ended the relationship for me. After six years of caring for a man I loved, I had to admit that he did not appear to want to stop drinking and that I was not going to be able to live with the drinking. I decided I had to leave. I could not live with an alcoholic who was quickly moving from being HIV positive to having a diagnosis of AIDS. I couldn't give him the care he needed and have HIV myself. It was too much for me to cope with alone. ALONE was the operative word. There was no way I could tell my family. We were not exactly close at that time and everyone was still suffering from my father's suicide.
The idea of telling my mother who drank as well was like contemplating torture. It just wasn't going to happen. When finally I was goaded by friends into telling them, I was betrayed left, right and center. I hardly knew what hit me. I was in shock. Just thinking about what happened when they learned their sister and daughter had HIV constitutes a story within itself.
I was right to have been cautious. My mother told people she had no right to tell. She told an aunt of mine who to this day has never once acknowledged to me that she knows about my HIV, but who felt she could tell friends and relatives right out in the open at my brothers wedding. This is just one small piece of the fallout I experienced from telling my family. Thankfully, we have been able to work through many of these experiences and things are okay today. As okay as they can be. It doesn't change what was said or done or how it made me feel at that time. It's just another part of this story.
I felt guilty for leaving Alex. I really tried to help him. But he did not want to be helped. Ultimately, it didn't have anything to do with me or what I wanted because it was his decision to drink . So we separated. I assisted him in finding a new home in Toronto where he would be close to services. We had lived in an isolated rural setting. We set up his apartment, we contracted the services he would need. I helped him with money. I made endless road trips back and forth (3 hours one way) making sure that he was comfortable and safe. I did everything I could. I still loved him and I cared deeply. I just couldn't live with his lack of hope or his alcoholism.
It was a real shock therefore, when I discovered he had entered into a primary relationship with his home care nurse just six weeks into the move. I was expecting our friendship to continue. I wanted to support Alex. This nurse was recently divorced and had successfully sued her ex-husband for a large settlement. She coached him into the idea of suing me. In the end he was successful at this. Wow! It was like being smashed with a two by four. In his mind, she was able to turn me into someone who had abandoned him.
She got him to the lawyers and in the end I had to pay the man who infected me with HIV $124,000 dollars. He could prove that he would never work again, that we had lived together for more than three years and that I had the money. Those were the only criteria the law required for him to do this to me. Nothing else mattered.
The bottom line for me is that I had to pay a huge sum of money to the man who infected me with HIV. No only did I not ask for HIV; no one does, but I had done my best to protect myself with what little knowledge I had at that time. It just want; enough. I feel quite literally sick to my stomach every time I contemplate the horror of this truth in my life.
In fact; at the end of the day it was my country, Canada, that once he got the ball rolling, forced him to do this. Social services was not going to pay for his drugs and treatment if they could find someone else to. Once they found out "the law" was going to make it possible for them to have Alex tap another pool of cash to cover their costs of paying for his treatment, it was out of his hands. Socialized medicine has it's bureaucrats, they have their bottom
lines to maintain. My own country did this to me.
I never got to see Alex again. When he died in the summer of 1996, I did not feel I could even go to his funeral. There was no way I could be near this woman who had so cruelly vilified me and forced his hand against me.
Some friends and myself held a small memorial for Alex in a place he loved in the bush by the river that flows through the land we shared together. We planted an elder tree in his memory. We gathered together some of the things that Alex loved, and told stories about the things that we loved about him.
Alex may have done some not so great things, but he was still a human being with a soul. He was just trying to get through life as a survivor himself. He endured things that he'd never asked for. He survived terrible abuse in residential school and foster homes as a child.
For those of you living outside of Canada, residential schools were a Canadian institution set up at the beginning of the last century by the Canadian government in cahoots with the Catholic church for the purpose of educating native children. (much like the boarding school situation created in the United States for native children) The horrors of the residential school system have scarred entire generations of Native Children. The despicable legacies these places of abuse and despair have woven into the fabric of Canadian and American history can never again be denied or covered up. This is due to the mammoth courage and determination with which the current generation of First Nation Peoples are addressing this massive social atrocity.
It never mattered in the eyes of the authorities that Alex had infected me. He didn't know he had HIV when he infected me. All the facts that pointed to the truth that he did in fact infect me, were either seen as irrelevant or ignored all together. It didn't matter that he had been an IV drug user and never told me. (I never thought to ask that question in 1986). He confided this to me after he found out he had been infected and realized his needle using days might have contributed to his infection.
The Red Cross
There had been a major operation at McMaster Medical Center as well where both his knee caps had been replaced. This was before we met. This would have required a transfusion, but because he'd been exposed to other high risk modes of infection, they balked at even considering he could have been infected by bad blood. We in Canada had a scandal where the Red Cross continued using blood they knew could have been infected. ( Just like in the United States).
Thousands of people were infected because of this. He also had confided to various friends; never to me, that he was indeed a bisexual, having slept with dozens of men prior to our relationship and with some for money. No matter how you looked at it Alex should have had some inkling that he might have been exposed to this virus and mentioned something of this to me.
When it came time to stand up for me, with the information I outlined above, would any of these supposed friends come forward in my defense? NO! One guy said he could not betray another homosexual brother. Homosexual brother? How did saying that include me in the picture? If Alex was homosexual in this man's eyes, what did that say about his attitude toward me as Alex's partner of six years? It was like saying; "You don't even exist". But these same "friends" were happy to tell me how to run my life and abandon me when I wasn't a happy person to be around. Being unhappy and un-together was not allowed. They had their problems too. It was just too bad, for me.
How to Cope
After all this was over, I was left to the task of deciding how to cope with information that Alex had slept with 3 women in our community and never bothered to tell them about his HIV status. Never mind the implications these betrayals had on me personally or that one of the women was a business partner of mine at one time. I still have dealings with all of them, whether I want to or not. It's a small place.
This disturbing information had come out in discussions we had prior to his departure for the city. What was I to do? They had to be told. It ended up being a disaster filled with its own set of betrayals. They all got their testes, all were negative and as far as I know continue to be... and well...I am just so tired. I am tired of the betrayals. I am tired of the stigma. I am tired of my feelings and my memories that won't go away. I am tired of having to live with the knowledge that a former friend betrayed my status to numerous people in my small rural community because she couldn't cope with her own emotions around just knowing someone with HIV. I am tired when I think about the treatment I received from the medical community.
The First Clinic
I think about the first time I went to a clinic in June of 1987. I think about the form that asked me; a female heterosexual woman, how many times a day I got fisted, (something I didn't know about at the time and don't care to think about to this day), how much semen I'd ingested down my throat, how much anal sex I had, how many partners? How many times? What sex? No one bothered to ask me my sexual orientation before handing me this form. Did I look like a gay man? How could they do such a thing? It still makes me feel sick when I think about it.
I remember sitting there with tears streaming down my face. No one came to my assistance. I was labeled a "difficult patient" by the first specialist I saw. Going to the clinic was more like what I imagine checking in with a parole officer might be like than going to a doctor. I don't remember one kind or caring health care worker in those first five years.
I don't remember one sincere smile. I only knew that doctors were supposed to help you. Where were they? I remember deciding that I felt like a germ on a microscope slide. At the next clinic I went to, I recall sitting with a social worker explaining that I still wanted to have children; and that if I didn't have my own, that I might want to adopt a child. One could have forgiven her if one were to confuse her reaction to me with how one might react to an ax murderer making the same overture. I could see in her eyes that she truly thought I was vile. I regretted opening my mouth immediately. This was in 1989. Once again, I'd confused a health care worker with someone who might be able to help me or care about me.
So many times I recall talking to health care professionals and vainly trying to explain to them I felt fine. I would start out telling them I was okay, that I felt okay and that I thought I was going to probably continue to be fine. It would only be a matter of moments before their eyes would glaze over and I would see the emergence of their patronizing disdain. It felt to me as if, to themselves they were thinking, "poor thing, let her have her illusions...she'll be dead within the year."
No one believed you could survive, and they constantly let you know that. No one ever said they would try to help me. Why would they? Everyone who got HIV died of AIDS. That is what they believed at that time; without exception.
I guess through all of this, the thing that began to emerge and could no longer be ignored was my good health. Time was bearing out my truth. The truth was, I was not getting sick. I had my first viral load test last spring. It was very close to non-detectable. My T-cells have never been a problem. I remember once getting extremely upset because they went down around 500, They usually hover between 600 and 850 or more. I am not sick. At least not with AIDS. My problems; physical and emotional, I believe have come from the stresses I endured while coping with the IDEA of AIDS and other people's beliefs about people who have HIV and/or AIDS.
So I must say, it is with extreme anger that I recall the number of times I was spurned for asserting that I was fine. Now to have been told by the almighty voice of science that I have indeed been fine all along is just a bit more than I can humanly stand.
How dare them to have dismissed my claims as invalid and then back peddle when the truth of what I knew all along became irrefutable? The thing that is just so infuriating is that there is no where to go with this anger. No one to deliver it to. Just the amorphous world with the past and the pain that fills its memory. I have a new specialist in the city. I think he is really quite good. I like him because it seems he can actually hear my concerns. He is friendly and reassuring. Things in general are getting better so far as my relationship with doctors is concerned.
My General Practitioner and I are practically getting to be old buddies. But it's taken close to four years to develop that mutual trust and respect. When I ended up in the hospital over night because of an unrelated matter about a month or so ago, I was never so happy as when I saw my doctors face the following morning.
So, as I was saying, it was last spring when I got the results from my first viral load test. I was nervous. I would have liked a non detectable result altogether, but what I got was fine, really. In fact it was good enough for my specialist to look at me and say, your health is more or less the same as it was 12 years ago only you are 12 years older. You are a non-progressor.
I guess most people would have jumped for joy. But at that moment, my world imploded. It triggered the biggest depression of my life. I am not okay. I feel abused. I feel used up. I am so tired, I can hardly think.
I feel guilty for not being happy about my good test results. All that work, all that hanging on, all that determination was for hearing my health was fine all along? I could have handled getting that information a long time ago.
Viral load tests have been available in the states for years. We just got them last Christmas. I had to wait until the spring because I was not "sick enough". The bureaucracy of AIDS in Canada said that I had to wait an additional six months to find out that I was just fine. Thank you very much.
What in God's name had I been doing for 12 forsaken years living as a healthy woman believing I could get sick at any moment and die? I feel like I've been living through the worst possible mind-game imaginable.
So Now What?
Just getting through a basic week of normal stuff like doing my work (I am an artist/writer) getting to appointments and doing the grocery shopping exhausts me. I am an emotional disaster. I cry at the drop of a hat. I can't watch TV without crying. I can't be near friends with their babies or think about them without crying. I can't think about the life I might have otherwise had, without crying. That determination I mentioned at the beginning of this story is feeling pretty darn shaky. "I'm never giving up and I'm never giving in" is how one of Lenoard Cohen's songs goes. But I feel like I could cry for a century and not get out all the pain I feel.
My fear is that once I've cried it all out there won't be anything left. There won't be any me left. All of me feels like it's been used up trying to survive and stay sane during this horrible and devastating experience. My body keeps going and my life from the outside appears to continue, but from the inside the only thing I can see is a giant, great big broken heart. At least that is all I can see and feel as I write this. I know there is hope and I know there is a part of me that can start feeling better about my life. I just don't feel like I know how to start making that happen.
I keep hearing voices that say I have to keep tying and I have to keep wanting to keep trying. Right now I need a reason that is worth exploring. I feel like I need an apology, but from whom? I don't need any mute cliches or trite bits of patronage. This is not to put down the people who have genuinely tried to help me and how I acknowledge as truly having eased a huge amount of suffering.
I am, however at an impasse where I just don't see how to make things better. Every time I try to make things better, it feels like my efforts are sabotaged. I've been asking myself, what is the point? Maybe I'll find a way. Maybe I won't. I just don't want anymore input on spiritual evolution. There's enough spiritual carnage strewn about my soul as a result of what I've come to call "competitive enlightenment". There's always someone slightly more evolved ready to offer me some set of answers. What I am saying at this point in my life is: There are no easy answers for what has happened to me. And if one more person mentions my karma or the state of my past lives, there's no telling what I might say or do.
If and when I find some answers, I will update this story, but for now it's not a story with a particularly happy ending because part of me is still in agonizing emotional pain. I really wish it were different, but it just isn't. I feel like I need a real rest. I don't know how to go about finding that in reality.
I want my life to be okay. I want to be a happier person. I would like to start down a new path with my tentative diagnosis of good health. Right now I don't know how to make that really and truly happen because I just feel too overwhelmed, too tired, too emotional. I've come this far. And after all, tomorrow is another day.