What is it like to be kept in the dark about your father’s HIV status? Melanie Brooks discusses this and more on +Talk. Melanie’s Book, A Hard Silence, can be found here.
The following is a transcript of Melanie and Karl’s conversation.
MELANIE
What happened to me when HIV happened to my dad?
KARL
A hard silence. It’s a consequence of HIV stigma. And joining me today is the author of the book, A Hard Silence, one Daughter remaps Family Grief and Faith When HIV and AIDS changes it all. Melanie Brooks, lovely to see you.
MELANIE
Great to see you too, Karl. Thanks for having me.
KARL
Of course. And congratulations on the book. You and your family’s lives were literally turned upside down in 1985. You were just 13 years old. What happened?
MELANIE
My 42 year old father had a heart attack and had to undergo quadruple bypass surgery. Eight months after his surgery, it was discovered that the blood that had been transfused, either during or after his surgery, was infected with HIV and he’d contracted the virus.
KARL
And your father’s HIV status was kept a secret not just from outside of your family, but within, you included initially why? Yes.
MELANIE
Well, I was 13. My younger brother was eight at the time. I had two older brothers who were 15 and 16. My parents sat down with them right away and told them that they didn’t tell me and they didn’t tell my younger brother. I found out soon after, I always, I write about it as being kind of this baffling hole, but I knew within days I must have overheard something. But I don’t remember the specific experience of finding out, but my younger brother didn’t find out until seven years later. And so it was something we were keeping within our family, and we were living in Canada at the time and, you know, the same stigma and misunderstanding and the early days of this epidemic were happening there. And Canada was talking about drastic measures of quarantining aids victims in their families. And so my dad expecting to be dead within months decided it would be a secret. He didn’t think he would live for 10 more years.
KARL
How did you interpret your parents’ decision to initially not tell you and, and to keep it amongst themselves?
MELANIE
I think because I was seeing, you know, kind of the cultural response, I understood that there was risk involved, you know, and I, I was young enough that I kind of believed what was told. You know, I, I got it, you know, looking back on it now, I recognize that there were a lot of other factors at play in terms of, you know, my dad’s need to keep it a secret. I write very frankly, about the fact that we were part of the Evangelical Christian Church, and as many people know, the, some of the loudest voices of intolerance and stigma were coming from that community. And so I know there was a lot of fear on my parents’ side in terms of how that community would respond, what it would do to my dad’s reputation. And so there was a lot of fear then. I didn’t realize at the time that that was a big root of the, of the secrecy, but I recognize it now.
KARL
Yeah, it’s interesting, you know, when we sort of talk about our faith and our belief, and especially Christianity where we’re love thy neighbor and all of this, right? But it’s, it seems conditional sometimes. You write in the book actually, you say from the moment the catastrophe of dad’s illness struck our family. I lost my certainty in God’s goodness. My Christian faith told me that God was active in my life, that God loved me, that God wanted the very best for me, then Dad got second Dad died. What’s your relationship like now with your faith and, and how did you get to the place where you’re at?
MELANIE
So it’s complicated. It’s still, I, I’ve, I get asked that question a lot because I don’t resolve it in the book, and it’s still kind of unresolved in my life. It’s very difficult to completely walk away from it because it’s such a big part of my family heritage and my dad’s faith was such a sustaining force for him as he was going through this. So it feels like it’s not something I can turn my back on completely. I certainly have my eyes wide open when it comes to, you know, the institution of the church separated from personal faith. And that’s been kind of a journey for me to make that separation and recognize that, you know, the, the church as an institution has created a lot of the damage. I don’t know that, you know, you went back to some of the basic tenets of Christianity, right? Love thy neighbor, be right, be good, be kind. And you know, I still stand behind those beliefs, but it’s complicated. It’s difficult. And it’s, especially, you know, in our current political climate where we see the polarization and we see those extreme fundamentalist views influencing our politics and influencing, you know, our government, it’s, it’s really difficult. It’s a difficult kind of thing to navigate.
KARL
What about during the 10 years that your father was dying? How did you guys as use faith during that time to sort of come together to hold it together? I guess?
MELANIE
I mean, I think because it was just kind of the nature of our family structure and system. You know, church was our community. It was our, our system of belief. And I, and I had, I was embedded in it as much as anybody in my family. And, you know, part of this story was that you’re playing, you know, I had to play this kind of persona for a good chunk of that 10 year period. You know, you’re, you’re showing something on the outside and kind of ignoring the emotional turmoil on the inside. And I think I did that a lot with my faith as well. I kind of pushed down the doubts, the fears, the dis you know, kind of disenchantment the disappointment in an effort to have something solid that I was holding onto.
KARL
It’s a bit of a loaded question, really. How did the stigma surrounding HIV impact your life?
MELANIE
Well, I think, you know, I wasn’t impacted by it directly because people didn’t know Right. And that, so I wasn’t,
KARL
But the internalized stigma is there, Melanie. Right.
MELANIE
Well, I exactly, and that’s what I was gonna say. I think I carried, because we kept this shrouded in secrecy and silence, and I’ve done a lot of research on kind of how shame and silence go together. You know, I carried this shame about what was happening in our family without even understanding its roots or understanding. But I felt, you know, it felt dangerous. It felt like something to be feared. It’s felt like if we had to keep it a secret, there must be something wrong with it. And so I, I internalized a lot of that, you know, during that period of time. And I write in the book that my parents actually published a book the year that my dad died. And so he didn’t die with The Secret. And, you know, me writing this book is not exposing his secret. That was already known by the time he died in 1995. But even after that, I was removed from the family at that point. I had gotten married and moved away. And so I wasn’t there for kind of that reveal. And so for almost 20 years beyond that time period, I carried that silence because it felt like something I still wasn’t allowed to talk about.
KARL
Yeah, and it’s interesting, you also write, you say, why was I so bent on remembering and documenting what everyone else seemed content to forget. This is after your father has passed away. Why couldn’t I stop telling this story? Why couldn’t I land in a resolved place with my faith, decide if God mattered to me or not, and move on? Have you found the answers to those questions? And if so, what are they?
MELANIE
Well, I think, you know, what I, what I have come to understand is that when we’re forced to carry something silently, when, you know, our circumstances in my family we’re particularly unique. But, you know, I think every family has family secrets. I think everybody has experienced suffering in silence in some way, and it creates kind of this barrier between you and other people. And it’s really difficult to be authentic, you know? And I think I was searching for authenticity, and I, you know, kind of the guiding question that kind of led my writing of this book was, you know, what happened to me when HIV happened to my dad? And it was trying to find that answer of who did I become? How did it shape me? How is, how does it continue to shape me?
KARL
Yes. It’s a, it’s a unique story, but one has to imagine a lot of families, a lot of people went through similar situations back at that time, people who received blood transfusions. Right. You know, how do you hope that, in telling how you’ve processed it, how you’ve dealt with it, as you said, 20, 30 years beyond the fact Yes. Can help other people who were the children or the siblings, or the best friends of somebody who did nothing wrong other than got a blood transfusion and ended up with this horrible disease that was, is still, still so stigmatized,
MELANIE
Right. Well, I think, you know, what stigma does is it isolates people. It leaves people feeling alone, feeling like they are the only ones. You know, it was amazing for me to realize that our family was not the only one, you know? And to, to also find points of identification. You know, it’s been really important for me in this journey to not identify my dad as a innocent victim. Right. You know, diseases don’t discriminate, right? And they, they don’t have that power. And so in writing this book, I didn’t want to kind of set my dad apart as being somebody who was less culpable or, you know, in the way that we define, you know, how people contract this disease. And so that’s been really important to me. But I think what I really wanted was for people to understand that they weren’t alone. You know, that this experience is so isolating, but when we start talking about it, when we start opening space with our own story, it opens space for other people.
KARL
Melanie Brooks, thank you so much for your time. Thank you for the book. Thank you. Lovely to connect with you.
MELANIE
Great to connect with you too, Karl. Thanks for having me.
KARL
That’s what it’s all about. Here at Plus Talk, we’re all about turning positive into a plus. Check out the book if you want more information, you can look at our website. We are@pluslifemedia.com. And remember to like, follow and share across social media platforms at Plus Life Media. Until next time, be nice to one another. We’ll see you soon. Bye Bye.