For a series of stories inspired by our latest documentary, Stopping HIV? The Truvada Revolution, we sought out people whose lives have been directly affected by the HIV virus. Here, contributing writer Harriet Alida Lye talks with her friend Joshua* and his mom Beverley about how two diseases changed—and strengthened—their relationship as mother and son.
I’m late getting to my friend Joshua’s apartment in a part of Toronto he describes as “a thriving oxymoron just south of the crack line,” but when he comes down to get me, he’s wearing a tricky grin. “So,” Josh says, “Someone is here, but he won’t be here for long! Sorry!”
Videos by VICE
When we get up to his place—a second-floor walk-up above a cookie store—there’s a 22 year-old boy standing in the middle of the room. Mark is lanky, has dark curls, and shoulders that hunch forward. Josh gives a brief gesture of introduction then kisses Mark goodbye before we can even shake hands. As Josh closes the door, he lets out a half-laugh, half-sigh. “I just got back from picking that kid up from the hospital! That’s not how I was expecting to spend my Thursday afternoon.”
Joshua is a 32 year-old white gay man who grew up between Toronto’s “gayborhood” with his lesbian mother and his father’s farm two hours north of the city. Josh was diagnosed with HIV when he was 26, and I met him one year later.
As we sit on his balcony, Joshua explains that he met Mark on Tinder on Monday night and, after a few hours of chatting, Mark came over. “I work in an HIV research association,” Josh says, “so I know an awful lot about how HIV is transmitted, and we fooled around but didn’t do anything that was risky. It was only when he wanted to have some fucking that I said ‘Well, that would be amazing, but there is something you need to know.’ So everything was paused.”
I spoke with Joshua about opening up to his family, dating as an HIV positive gay man, and the unexpected consequences of joining the HIV positive community.
VICE: How did that conversation with Mark go down?
Joshua: Mark started that interaction by asking “Are you clean?” and I laughed and said, “Of course, I just had a shower!” Clean is a very stigmatising term, because if I reply anything other than yes then it implies that I’m dirty. Anyway, we had this long talk and I told him what I know, my experience, what my numbers are—which is significant when considering the likelihood of transmission. Then we continued fooling around. He slept over, we woke up, and fooled around some more. It was all lovely. I took him for a coffee and then went to work, and three hours later he texted: “I’m starting to feel really nervous…” He asked me what I thought about him taking PEP, post-exposure prophylaxis, to lower his risk of contracting the virus by 80 percent, but I told him that in my opinion the risk was already so low that it wasn’t necessary. Despite that, today he went into the hospital for tests.
Is this a reaction you’ve experienced before?
In varying degrees, yes. I normally use an app to meet people. We all know that there’s something about meeting in person that paints a more accurate picture of who you are, but in dancing, drunken environments I might meet someone and we can both think the other is fantastic, but I can’t be sure that they comprehend the gravity of what I’m telling them. That’s important, because HIV is so criminalised. An ex-boyfriend could sue me saying that I never disclosed, and I don’t have a signed affidavit—which is actually recommended by HIV legal services because otherwise you’re not protected, there’s no evidence. I could be charged with aggravated sexual assault, which is as serious as murder. So I find it easier to use apps, because on my profile I can list that I am positive. That means that I don’t meet a lot of people.
Is being charged for non-disclosure a fear of yours?
Yes.
You think about it regularly?
All the time. So I don’t pick up in bars.
You’ve told me that your mom’s reaction to you coming out as gay was saying “don’t get AIDS,” but was that something that you had thought about for yourself?
No, not before coming out. But after, the fear of contracting HIV was enough to make me afraid to have physical contact. It meant that there was a lot of guilt and shame associated with any kind of sexy-time with another man. It’s not the most prevalent STI in the world, but it’s certainly the most poignant. It’s the only one that stuck with me. It was like a morality clause that impacted all of my sexual thinking.
I spent $20,000 in three months. I maxed out all my credit cards and bought a painting on a payment plan. It tethered me to the world: I had to be around for three years to pay for this painting.
When did you find out you were HIV positive?
I found out for sure on February 26, 2008. A Tuesday, around 4 PM. But I kind of found out a few weeks before that, when I got a panicky message from the clinic saying that there had been a problem with my results and they needed to re-test the samples. I had just arrived in Prince Edward Island and I was alone on the waterfront. I remember the exact moment when I decided not to jump in, and the only reason I didn’t kill myself was because I didn’t want my parents to have to pay my university debt. That just seemed to me the most immoral situation to force them into—this was my mistake, and they shouldn’t have to pay for it. I found out later that in cases like suicide, university debt can be cleared! Thank God I’m terrible with money!
It took a long time to identify the virus because I was so weakly positive. My viral load is so low that I’m in a category called long-term non-progressor, or, believe it or not, Elite Controller. I consider myself very fortunate, and I’m resistant to starting medication because some people, even on medication, don’t achieve a viral load as low as mine is now.
What was your life like immediately after finding out?
The first two years I took horrible care of myself because I was convinced I was dying. I’d never been into drugs or alcohol and I’m thankful for that, because I know a lot of people who jumped headfirst into that form of “self-care” when they were diagnosed. They figured “well, I’m going to die anyway, so I may as well do that thing that I love until I do.” But the thing that I love is spending money, so I spent $20,000 in three months. I maxed out all my credit cards and bought a painting on a payment plan. It was a form of long-distance punishing myself, but it tethered me to the world: I had to be around for three years to pay for this painting.
But just a couple hours after I got the final result, my mom insisted that we go for dinner because she was concerned about what food to serve at her birthday party three days later. During dinner, she burst into tears because she didn’t know whether she wanted chocolate cake or crème caramel, and she was finding this such a stressful decision. That’s when I made the choice not to tell my family. I couldn’t reconcile this dramatic moment of my own mortality with their daily concerns. I didn’t tell anyone in my family for over three years.
Do you feel like not telling them helped you?
I’m not sure. I wanted to wait until it was something in my control. Until it felt like I could fathom it. I did not want what was going on with me to become an issue for anyone else.
Some of my most valued mentors are positive, and they’re the coolest, wisest people. It’s because they’ve learned to live with uncertainty.
What provoked you coming out to your family?
When my mom was diagnosed with cancer in 2011. She’s always complained about her health: She doesn’t have a headache, she has an agonising verge-of-death head-explosion that is likely fatal and will kill certainly all of those in her near radius. But when she called to say she had a rare lymphoma, I was completely shocked. Her third sentence was “don’t worry, think of all the time we’ll have together when you’re driving me to appointments and with me at the hospital!” That felt like a huge anvil falling on me. I was only just starting to feel like my life was in a place where I could dream, and look ahead, and have something to look forward to, and suddenly all that was gone.
Would you not have told your family had she not been diagnosed with cancer?
It’s possible. I felt like I needed to tell her I was HIV positive to lend validity to my taking some distance from her during her treatment. It felt like I needed to compete, because she would say “nothing is as scary as cancer,” and I needed to tell her “actually, you’re not the only one who is dealing with mortality.” When she would complain about everything she was going through, I would tell her that it was important that she not make cancer a part of her identity. It’s tempting to go to that place, but I don’t feel like it’s the best way.
Do you feel like you’ve been able to do that with HIV, and keep it separate from your identity?
Yes. But then I have experiences where I meet someone, and they’re really nice, and we have a discussion and I think it’s out of the way, but it’s actually only just beginning. I have yet to meet someone where my status is not a factor. And being a lonely person, as I am right now, it’s kind of an emotional flare-up every time I meet someone new.
Is being HIV positive what you expected?
No. I crossed over into a part of the gay community that had previously been hidden to me, and it’s incredibly loving. Some of my most valued mentors are positive, and they’re the coolest, wisest people. It’s because they’ve learned to live with uncertainty. When you are comfortable in the unknown, and in the in-between places, there’s nothing scary. There’s no stopping you. It’s funny to think that something that might physically limit me could emotionally free me. But in many ways, that’s what has happened.
Photo via Flickr users Phil and Pam Gladwell
I met with Beverley, Joshua’s mother, in her co-op apartment two blocks from her son’s place. Beverley lives on a leafy street lined with brick-townhouses—it’s definitively north of the figurative “crack line.” She has a soft, glamorous voice like a movie star from the 40s, and she was wearing a T-shirt that her son commissioned a local artist to design. She turned off the air conditioning so we could better hear each other, and sat on the sofa next to a stack of hand-folded Kleenex.
VICE: When did you know that Joshua was gay, and was this a separate moment from his coming out?
Beverly: Yes, they were very different moments. The first time I thought Josh might be gay was when he was eight and dressed up as Mariah Carey and did a lip-sync performance to one of her songs. But he actually came out to me when he was 16, over Pride weekend in Toronto. His recollection is that I cried, and—well, I think I did. I told him I was proud of him for being true to himself, but I was also concerned. I was concerned about AIDS, and that life was going to be more difficult for him.
I myself was a closeted lesbian until I was in my 40s, so I can’t address what it would be like going through my 20s and 30s as a lesbian and looking for a lesbian partner. But I knew being out at any age came with a whole new set of misconceptions, stereotypes, and challenges.
But when I heard Josh’s diagnosis, that was the hardest day of my life. The cancer was a no-brainer: I was going to live or I was going to die.
When did Joshua tell you he was HIV positive?
In June of 2011. I was diagnosed in April of 2011 with stage-four incurable lymphoma, and my only chance for survival was seven months of chemotherapy followed by radiation and a stem-cell transplant. A period followed where Josh indicated to me that he was going to need some space. I was upset, of course, but I should have trusted that he would have a pretty good reason. And then, when he told me he was HIV positive, I understood.
Do you think that your having cancer and Josh having HIV allowed you to understand each other better, or prevented you from understanding one another’s separate experiences with illness?
In terms of mother-son relations, I think that illness exacerbates whatever is right in a relationship, but also whatever is wrong in a relationship. It’s all about perspective. When I got my diagnosis, I was scared. But when I heard Josh’s diagnosis, that was the hardest day of my life. The cancer was a no-brainer: I was going to live or I was going to die. But he’s my son, and I want to be here for him, whether he wants me there or not.
Having had cancer, and having a son with HIV, could you speak to the difference in public perception of these two illnesses?
I think that HIV is much more stereotyped. The main stereotype, of course, is that it could have been avoided. However, many years ago, there was so much fear and mystery surrounding HIV and AIDS, and I don’t know if that’s ever truly gone away. I think there’s so much blame, and guilt as a result. But Josh is so perceptive, and when we’ve talked about it, I’ve come to understand that a young man just getting in touch with his sexuality could so easily find himself in a situation where he ends up being at risk without even knowing it.
There’s a quote from an end-of-life counselor I met while in treatment who said “You have to fall in love with whatever’s happening to you.” I learned to embrace the cancer because it was a part of me, it was part of my body. Just as we have National Cancer Survivors Day in Canada and the US, I think we should have National HIV/AIDS Survivors Day. It’s all about celebrating life.
When Joshua told you he was gay, you said that your major fear was that he would get AIDS. Now that he’s HIV positive, and doing so well, what is your major fear for your son?
I think aging with HIV is going to be hard, but more presently, because of his status, it’s difficult for him to enter into a relationship with someone. It’s so much more difficult. And that saddens me. It’s not a fear, but it saddens me. I do believe that because of the medication that’s available now, he will live a long and productive and healthy life, with a normal life span. I just want to see him happy.
Do you have any advice to mothers of children with HIV or AIDS?
Love your child. There is no other advice.
*All names have been changed at the subject’s request.
Follow Harriet Alida Lye on Twitter.
