World AIDS Day 2018…My Day of Reflection

Yesterday was December 1st, which is designated as “World AIDS Day”. This year was the 30 year marker for observance of this day. HIV and AIDS have been around long before this day was designated to bring the crisis to front-mind awareness.

I was diagnosed in August of 1993. I had been in a “no-risk” space at that point for approximately 3+ years…so, I was infected in the late 80’s. I actually am one of the rare few who know exactly when and where I was exposed to the Human Immunodeficiency Virus (HIV). It was a one-time share of a needle, which was very out of character for me, but it happened due to the situation at that moment. I don’t know if it’s “good” or “bad” that I actually know my infection route. I guess it’s good in the sense that I never wonder “how” I got the virus. Yet, it’s bad in the sense that it makes me “blame” someone else in some ways, when it actually was entirely my choice to share that night and thus my own fault. I have always worked to take responsibility for my own actions and I made a split second choice that night that was the wrong choice and thus changed my life – or at the very least altered the trajectory. We never know what’s going to be handed to us in our lives, we just never know. 

In the 1990’s I lost quite a few friends in the height of the AIDS epidemic. Prior to knowing my own positive status I was working with local organizations to spread prevention information.  In the summer of 1992 there was a March on Washington (I’m sure that many of you remember) and it was one of the very last times that the AIDS Quilt was displayed in it’s entirety on the Mall in Washington DC. I was there that day; I walked the quilt with my best friend, Nancy. I was moved to tears over and over that day. Each of those panel represented someone’s life. Each panel is 3 ‘x 6’ in size, representing the basic size of a coffin. Every panel was handmade by someone who loved that person or even a group of people would together make a memorial panel. There was something cathartic in the whole scene. 

I vividly remember sitting down on one of the benches on the edge of the Mall with Nancy, taking in the enormity of the display. It covered the whole Washington Mall. Quite the feat of volunteerism to get it displayed with huge amounts of care and dignity shown by all of them. The quilt idea was borne of Cleve Jone’s incredible mind. It’s called The Names Project and is still in operation today. The quilt now travels in smaller displays around the country. I’m not sure how big it would be to be once again displayed in it’s entirety. I highly recommend that you visit the Quilt’s page and take some time to look it all over, reflect, learn and NEVER FORGET. 

The display that day brought my mind very close to beginning to think about getting tested myself. Up to that point I had not sought out testing for myself. I naively figured that since I hadn’t been using illicit injection drugs for over 3 yrs. and I hadn’t been sexually promiscuous with anyone who I thought of at that time as a risk, that I couldn’t possibly have gotten infected. That was pretty standard thinking at that time. We have learned so much since! I recall having a physical reaction as I walked through the miles of panels and I shudder to think that now the Quilt has more than doubled in size. It still gets displayed, in partial displays, around the world.

So, that was the beginning of me thinking about getting tested. Finally in July of 93 I got pneumonia and my then therapist urged me to get tested; just so I would at least know if there was any chance I had been exposed during my drugging days. So, in mid-August I visited the Feminine Health Center. I was paired up with a great counselor, Assiah, who interviewed me in-depth about my history and possible risk factors. Then we drew blood and it was sent out to the lab for testing. The whole process I remember cost me $25. But in my mind I was going to come back negative and those who kept urging me to get tested would shut up. The tests at that time took 2 weeks to process and you had to go back in person to receive your results. On Aug. 31, 1993 I went back for my results.  

I was taken into the private discussion room by Assiah. She quickly closed the door, spun around and said “You’re positive.” then burst into tears. I stood there stunned. I didn’t know what the fuck to do at that point. She was obviously upset at having to tell me this news. Come to find out, as she told me later, she had never had to inform a woman of a positive outcome before, only men. And the fact that I was lesbian and was HIV+ was very unique. Lesbians are known to be in the least-risk group for infection and were usually on the front-lines of care and prevention.

I remember sitting down and putting my head in my hands. I was super confused. I felt like I had literally been gut punched and was gasping for air. There was now an expiration date stamped on my forehead. Fuck. I knew this was not going to be a good experience; nope, not good. I asked for a second test and had more blood drawn for it, but I knew the result would still be the same. I now had to figure all of this out. I had to first tell my family, and I knew that would be the hardest thing. And I had to get educated; to learn how I was going to beat this beast within.

I have lots of side stories of telling various people in my life about my infection and how it related – or not – to them and our relationships. My family all gathered at my home at the time, and I told them all together. They, of course, had lots of questions, were very upset and concerned for me, all while bursting with love and support for me. Thank my lucky stars for this, I don’t know what I would have done had my family shunned me, as happens in so many instances. Things would have definitely turned out very differently had that been my case. I am super grateful that it was not, but I feel deeply for those who do encounter that kind of response – especially from family and close friends.

My life changed on that day. It was a definitively distinct change. I could no longer be as casual as I had previously been about love, life and living. I quit drinking immediately. I also discovered on that same day that I am co-infected with hepatitis C, a common hepatitis for IV drug users to contract. I had been an on again off again kind of alcoholic. If I wasn’t shooting hard drugs I was drinking myself into comas. Yes, some serious self-destructive behavior, I know. I figured I wasn’t going to live long at that point. Back then the average time between diagnosis and death was 3-5 years, sometimes a little longer for women. I just concluded that my future was over; I had no future in my mind at that time. But I was determined to educate myself and those around me so I could live as long as possible, as healthy as possible. 

So much has gone on in my life since that hot August day in 1993. Life has a way of changing continuously. We grow. We learn. We lose. We win. And life just continues to go on. I had been handed a massive challenge and there’s nothing that I like more than a good fight! I put my whole being into becoming as educated and informed as humanly possible. I began living a cleaner, healthier life. I learned to love those who loved me with a renewed fierceness and determination. I stopped being a total asshole and adopted a kinder, gentler way of conducting myself. And I fought. 

Today, I am healthy and doing very well. My journey hasn’t been so smooth sometimes; I’ve struggled with addiction all of my adult life. It rears it’s ugly head occasionally and it’s a battle to the death for me. I’ve had many, many good years; fun years and years full of awesome memories and tons of love. I’ve travelled, farmed, built, raised, and let go of things when the time came. I’ve had a couple of spectacular relationships that I wouldn’t trade for anything. I discovered real love and basked in it like a snake in the sun. I’ve lived a pretty decent life; being lucky enough to have access to great medical care and the cutting edge in medication I remain healthy and happy.

So, yesterday is my annual day to reflect on these years of living with HIV and to remember those friends of mine who didn’t have the good outcome that I’ve been gifted. I remember their faces, their voices, the laughter and the crying; every one of them beautiful and a gift to earth in their own ways. May they be dancing wherever they are. 

Peace ~ MB