Video #2 Manuscript

The Heart is a Reversible Organ

 

By Shelly Tognazzini with Edmond Kilpatrick

The heart is a reversible organ, in that it beats and can be beaten...and as it is beaten it beats...beneath the skin, through the muscle, in the blood…to the bone…

 

I tested positive for HIV. And I lost my passion. I lost my desire to live my life the way I had for more than 40 years.  I really was lucky that in my life I woke up for most of it and loved my life. I did what I did everyday out of passion. For half my life, I made my career as a contemporary dancer and I ran a dance collective that presented and produced shows. I was privileged to be able to live my life like that. I was beyond lucky. 

I somehow had to let go of my life before HIV. I was a dancer, and when I was diagnosed life changed. 

           

Dance had been my power and strength, my confidence, and I couldn’t find my way past the shame to come out in the arts community. I was embarrassed and didn’t want to end or reinvent my career as the sick dancer with HIV. 

           

My shame meant that I gave it up, stopped dancing, stopped participating, and stopped taking class or thinking about choreography. My life became unrecognizable. And, so my whole world, as it were at that point, just slowly started falling apart. And, the things that gave me the most pleasure, I pushed away. 

 

Since my diagnosis I haven’t had sex. As pathetic as that sounds, I just said, no. So, all things I loved, dance, sex, companionship even, have been hard. Because it’s all about trust. 

           

Letting go of the past, everybody has to do that right? Just let go, but hold on to what will keep you going, or even alive. Sometimes that is a really hard thing to do. And, acceptance is a process. It involves understanding the present. I am not sure why I chose the virus to defend, or why I let go of the things in my life that gave me reason and purpose. I wish I knew now what I knew then. 

***

In the beginning, my mom was my touchstone and my entire HIV support system, though my sister also immediately supported me and listened.

           

My sister never hesitated when I told her. She was hurt and angry at how I was infected, but she simply accepted the diagnosis and moved forward. She’s a warrior too.

           

My father and my brothers, on the other hand, basically stopped talking to me. They assumed they knew the story, or had a version of one from the 80s in their mind. They didn’t get it, and or, chose not to. They just didn’t want to hear about it. It wasn’t a gradual thing, it was literally a cut-off and I didn’t hear from them for many years. Some years, I got an obligatory phone call at Christmas or a birthday. It was awful not hearing from them, and for a long time, I just gave up.

           

When I first called to tell them, they were shocked and ashamed, and really had no idea what to say or how to be supportive. They couldn’t even ask how I was doing. They were so disappointed and angry at me. Like, it was my fault and I deserved it. So, suck it up. I was devastated, and we have never really talked about HIV again.

 

Recently, maybe because my mom died, I have been building back these relationships as best I can. But, it’s hard. How can we reconnect if we can’t talk about HIV? How can we navigate a relationship when one of the biggest pieces in my life is not open for discussion? I hope, and even pray some days, that we will find our way to a better place of communication. A day when we can talk about it without shame or fear. I hope so. I am trying again, and I won’t give up.

           

It was really hard on my mom. I think the hardest on my mom. She didn’t have the information like my daughters and she worried I was going to die.

           

My daughters are eleven months apart, and so amazingly different, wonderful, and wise. When I tested positive, my daughters were in their twenties and they came to see me right away. My youngest knew more than me really, and she said, “Mom, you’re going to be fine.”

           

My oldest had less information, and I thought that was odd because they are so close in age. But, they had different circles of friends and vastly different views on so many things. I guess it shouldn’t have been so surprising to me. It was just weird, their experience of persons living with HIV was current and far more informed, but they grew up in the 90s when the fear mongering and shame-based messaging was rampant, and folks were still dealing with the madness of the 80s with stigma fueled by ignorance and bigotry. That seems like forever ago.

           

Treatment has changed, and the meds are less toxic now. A lot of people only have to take one pill a day and have no problem adhering. They have no fear of the medication, the side-effects, or long-term effects. To them it’s just that simple, and they move forward positively positive.

           

I never really thought about not being out with my HIV+ status. It didn’t strike me as something that was beneficial to me or my family. And those who were going to fall by the wayside were going to fall away anyway. So, waiting for them to leave me was like pulling a Band-Aid off one little hair at a time. Only this was like pulling duct tape.

           

Part of me wants to say, “Just be out with your status and let the people fall where they will, because it will give you such a sense of relief that you are who you are. And you are able to be who you are without that.” Because the shame and the stigma around non-disclosure will continue to come up every time until you decide you are comfortable in your own skin. And, it does mean you will lose people. Like, there is no way around it. For so many of us, not everybody is going to get it. Especially family. And the assumptions that people make are ignorant and so old. It is hard to imagine that people haven’t changed the recording in their minds. They don’t know how far the science has come, and how far behind the stigma is. I know people who have to take their own cutlery when they go home to visit. Like, what the fuck! This is your family? And they make you bring your own cutlery?

           

The stigmas are real. And it’s different for low-barrier people who can’t get off the street than it is for others who are functioning with HIV. There are many on the Downtown Eastside who can’t adhere to their meds and are only able to just survive through the harm-reduction model. Some of these folks not only question the meds and challenge the side-effects but have multiple barriers to care and adherence, like homelessness, addiction or domestic violence and all the issues that go along with that. For them, taking meds is just not possible. It is an overwhelming dark cloud hanging over their health and there is nothing positive about living with HIV like that.

           

And all I know is I have a privileged life and I should be fully aware of that, and the people who work in frontline care also need to be aware of the advantages they have that others don’t. There are definitely differences in how people from diverse demographics are able to cope with this disease. Yet being positive about being positive is so important to everyone. And doing something, giving something back. Whether that’s volunteering for the AIDS Walk, or going to vigils on December 1st for International AIDS Day, speaking up and sharing your story, or doing overdose-awareness days. Participating in those kinds of things helps. It helps get a message of hope out there, even if it’s just to one person that day. We are not that different from each other, so I felt very early on I had a responsibility to do that. 

 

Yeah, so, HIV became my world.

 

Medication was the answer and dance reminded me that I was sick and couldn’t continue, so, I went to work for the virus. I became employed by HIV.

 

And I think, over time dance just slowly went away.

 

The greatest loss for me was when I pushed away the things that gave me the very most pleasure. And now, to get them back gets complicated. I’m getting older. 

 

And so, this is how it works… I was born May 30, 2008 when I tested positive for HIV... heartbreak is heartbreak...and all that is written in stone, can be changed with breath… and the destiny of stone is dust… and breath makes dust dance.

Edmond
Kilpatrick

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