Living with HIV

At first, there is shock. Disbelief. Tears. Fear. That’s how it starts. But the day-to-day realities of living with HIV—managing your diet, taking meds, choosing how and when to tell your family—come later.

illustration Kate Sinclair

Aaron Burke is fluent in the language of HIV. He’s done the research. He knows the terminology. He’s a 43-year-old senior manager at a prominent Halifax company and by god he’s managing this disease, too.

He’s also managing not to really tell anyone he has it.

“Once the fire is going, I think it can get out of hand pretty quickly,” he says. “And people can start making different decisions. You know, Joe Blow works for a wonderful supportive company. They find out he’s HIV-positive, has post-traumatic stress disorder, whatever, it could be anything. Suddenly you’re not put up for promotion.”

Right when he was diagnosed he told a few close friends—no one else—about his HIV-positive status and the possibility that it may, someday, morph into AIDS. He figured then he’d be gone in two weeks and someone had to come visit him on his death bed.

That was three years ago. He’s never made it to the death bed. Actually, he’s barely even laid down for this thing yet.

Thirty-seven months into this campaign—and it is a campaign, not a war, not a battle, not a series of skirmishes, but a dull and plodding watch over his diet and his health—Burke keeps his status to himself.

He’s close to telling his family—two parents, two siblings. And getting closer all the time, he says. “Would you tell your family right away if you had cancer?” he asks. “If it was being managed, which is the case with me, well, maybe you wouldn’t.”

“Disclosure,” he says, is a matter of “weighing the pros and cons.”

Pro: If he doesn’t tell his family members, they don’t have to worry about it.

Con: So long as he keeps the secret, he’s missing out on support they could and would gladly, he says, offer.

So, it’s a draw. For now Burke stays in the closet as a PHA (the current acronym, which stands for Person with HIV/AIDS), still looking for the right time to launch what he calls his “second coming out.”

Yes, Burke is gay. Maybe you assumed that. Did you?

Did you guess Aaron Burke isn’t his real name, too?

Burke is taking long lunches to meet me at his tidy, minimalist condo in downtown Halifax where HIV meds sit with Metamucil and multivitamins in a round wicker basket on the kitchen counter. I don’t know what he’s telling his boss about being away so long in the middle of the work day and I don’t ask. Burke is the kind of man who figures these things out.

Aaron Burke managed not to get HIV,<@14.29 feature intro bold> human immunodeficiency virus, for a long time. First by luck, later by vigilance.

He’s been having sex with men since he was 21 and that alone puts him at higher risk for contracting the virus. Based on the current stats from 2005, men who have sex with men in Nova Scotia account for 43 percent of new infections compared to 19 percent for the next highest group, intravenous drug users. There has never been a year on record in Canada or Nova Scotia when the largest number of new infections has not been in the men-who-have-sex-with-men category.

Burke got through the early years of the epidemic when AIDS was called GRID (Gay-Related Immune Deficiency syndrome) and remembers sitting with gay friends in a living room around 1985 watching a news report about a rapidly spreading wasting sickness. “ saying gay men and the ages,” he says, “and it was something like, they found 30-year-old gay men are coming down with this illness. And we were like, oh, phew, it’s OK. It’s the older guys. We were that cocky about it.”

By the late ’80s, Burke had a long-time HIV-positive boyfriend and the relationship was the culmination of a slow change in Burke’s attitude toward the virus. “It became a problem for me to be intimate with him,” he says, “to the point where I was having trouble kissing him, which was ridiculous because even back then we knew it wasn’t transmissible that way.” Burke called things off and broke the guy’s heart, which in turn broke his own heart. “In my mind, though, there was just fear,” he says.

From that time until he was diagnosed, Burke says, “I would say I was AIDS-phobic.”

Aren’t we all?

And doesn’t the difference in our phobias lie in how well or poorly—how rationally or irrationally—we protect ourselves from this clinging little invader which has been called the smartest virus in the history of humankind?

AIDS phobia can scare some people to abstinence. For others it can mean merely sneaking a peek in a one-night-stand’s medicine cabinet to look for tell-tale pill bottles. For some people it means religious visits to the needle exchange. For others it means crossing fingers and hoping for the best before sharing a kit.

Burke’s not a drug user. He’s a white, middle-class gay man who, like probably almost every other white, middle-class gay man (and like almost anyone else, I would imagine), refused to resort to abstinence as a way of avoiding HIV.

Burke’s approach was different:

One: Follow the rules for safer sex as best as he could.

Two: Get tested for HIV every three months.

Didn’t work.

He had a one-night stand during the 2002 Christmas holidays and, as always, made sure his partner used a condom for the insertive sex. But before the guy topped him (and before the condom) the man rubbed his penis against Burke’s anus and some pre-come entered Burke’s body through pre-existing hemorrhoids.

And that did it.

Did you buy that explanation? Because the conviction is feigned. Really, you never know. Unless you have one sexual partner or share one needle or have one blood transfusion or you’re the newborn child of an HIV-positive mother, you can’t ever be sure when you contract HIV or from whom. There are no flashing lights, no immediate health disasters. Your urine doesn’t change colour, nor do your eyes go bloodshot. Your heart doesn’t skip a beat. That comes later.

Burke had sex with more than one person during the span of time in which he became infected, but as best as he can figure (because even his doctor said about the pre-come-to-hemorrhoids method of transmission, “Well, it doesn’t really sound right but, I guess.”) it was that Christmastime one-night stand.

Burke never told the guy about his diagnosis. He doesn’t know if the guy knew back then and he doesn’t know if the guy knows now.

You want to know how Burke found out?

Burke may have been AIDS-phobic, but he wasn’t paranoid. He didn’t have the foggiest notion he might be infected. He was, after all, educated about transmission and careful about following the rules. So he went for his regular test at the AIDS Coalition of Nova Scotia. No biggie.

Needle in. Blood drawn. Out the door. Back to life.

And then, wouldn’t you know it, for the first time ever he loses the little piece of paper he needs to collect his anonymous results. What a friggin’ annoyance.

He goes back to the AIDS Coalition office in two weeks and says to the nurse, “I hope this isn’t a problem, but I’ve misplaced my number.”

“Well, no, not really…except that…well…”

And his mind’s suddenly racing. Oh my god. This is not good news. And his chest is pounding and…

“…the problem is, there’s only one test result left over and it’s positive.”

And the whole room goes black.

Aaron Burke hops up from the loveseat we’re sharing and grabs his Palm.

“Let me give you some numbers.”

And he starts to reel them off, scrolling through with his stylus, and I’m looking at him like he’s a crazy person because, well, who keeps this kind of information?

“I know. I know,” he says. “My doctor, he says, ‘You’re the only patient I have where you tell me your numbers.’”

The process of learning to be HIV-positive is truly complicated. You have to understand a million things: the way the virus attacks your immune system, how your behaviour can ease or restrict the virus’s assault and how to navigate up-to-then-unexplored facets of the health-care system.

But hold up. I’m thinking too much like Aaron Burke, who’s the kind of guy who’s going to learn all this stuff and then spend every evening after supper on the ’net learning more.

Burke is in a privileged place as an HIV-positive person. First off, he’s living in the west, which puts him head-and-shoulders above the majority of people with HIV and AIDS living in the developing world, where drug availability, access to support and other social structures isn’t at the level it is in Canada.

Burke is also white and middle class. He’s well-educated and his literacy level is high: He can use the term “seroconvert” and use it properly.

And he’s a man. You know that. But did you know this? The majority of research done on HIV/AIDS over the last two decades has centred primarily on how the syndrome affects men. Researchers are only beginning to scratch the surface when it comes to the ways it affects women.

Burke has a job. And not only that, he has a job that allows him the flexibility to deal with the health blips that come along with being HIV-positive, like, for Burke, occasional all-day headaches.

All these benefits aren’t lost on him. He knows he’s in a better position than the average HIV-positive fast-food counterperson, someone who doesn’t have the luxury of telling his boss he couldn’t sleep last night and he’ll be in at 10am instead of 8am.

Burke says, “I have a primary care physician, who is considered the leading HIV general practitioner, I have a mental health worker, I have a nutritionist at my disposal, I have an HIV-specialized pharmacist at my disposal, I have the AIDS Coalition. I have non-judgmental friends who are a support structure for me. I’m pretty sure I will have my family who will be a support for me. I have an awareness that when the virus mutates, I will have a variety of drug options at my disposal. It’s not so for other people in other parts of the world.”

Nor for some other people here.

Support for people with HIV and AIDS in Nova Scotia is easier to access depending on where they live and how “out” they are in terms of their status.

But you can think of the clinical support structure like this: Some PHAs—about 150 to 200—are both “in the system” at the AIDS Coalition of Nova Scotia and receiving care at the Infectious Diseases clinic at the Queen Elizabeth II Health Sciences Centre. Some receive support from smaller AIDS groups in the province too. Others—hundreds more—choose only to go to the ID Clinic. Others are infected, but don’t go for care anywhere. The next stratum of PHAs in Nova Scotia is made up of people who don’t even know they’re infected.

How many?

I was afraid you’d ask that.

In the 20 years between late 1985 and the end of 2005, 678 people tested positive for HIV in Nova Scotia and PEI (Health Canada, which reports these statistics, combines numbers for the two provinces).

But that number—678—doesn’t tell you much.

It doesn’t tell how many of those people are still alive. It doesn’t tell how many still live in Nova Scotia. It doesn’t tell how many PHAs have come to this province that were diagnosed elsewhere. And there’s this: The current way of thinking about how many people out there carry HIV is based on an epidemiological model which says for every person diagnosed there are three to five others who don’t know their status.

Aaron Burke knows his status and knows a lot about it. He’s reeling off numbers and dates, pausing every once in a while to make sure I’m clear on the meaning of HIV terminology like CD4 count (immune system strength—a normal low level is about 500) and viral load (how much virus is there—if you’re HIV positive you want to be “undetectable,” which is not zero , but dormant).

These are only numbers. But they mean a lot.

The numbers don’t tell how many years you have left to live or how many people you need to tell that you’re infected or how many times you’ll breakdown and freak out and punch the wall in the weeks and months following your diagnosis. The numbers tell which side—the immune system or the HIV—is winning.

So, let me give you some numbers. Let me give you Aaron Burke’s numbers.

First blood work results: CD4: 436; viral load: 96,000.

“The fuckin’…”

Two months later: CD4: 570; viral load: almost tripled, up to 271,000.

“The fuckin’ thing…”

Three months later: CD4: 549; viral load: more than doubled again, up to 609,000.

“The fuckin’ thing is out of control.”

Doctors at the Infectious Diseases Clinic put a finer point on it. They sit him down and suggest Burke begin taking HIV medication.

“No. Not yet.”

Are you shocked? I was. I figured: You have a disease, there’s medication available, you take it, and the sooner the better. But this is a far more complicated equation than HIV = meds. It’s back to weighing the pros and cons.

The pros are that meds (today’s regime is called highly active antiretroviral therapy, or HAART) keep people alive longer and keep them healthier.

But the cons of HAART include taking pills every day for the rest of your life, side effects ranging from headaches to liver damage, the longer you can wait to begin treatment the longer you can stay on it, and the schedule for taking meds can be extremely difficult to stick to.

The prevailing knowledge is that you need to be 95 percent “adherent” in popping your pills for optimum viral suppression. In real words—the better you are at taking your pills and taking them exactly on time, the better off you’ll be. It’s a far cry from the early days of HIV meds when patients were taking up to 20 different medications in a single day—some with food, some on an empty stomach, some which had to be kept cold, some in the middle of the night—but it’s no breeze.

Back in those early days, adherence was an issue that kept anti-retroviral therapy out of the hands of Africans, who, it was argued, couldn’t hack the stringent schedules and didn’t necessarily have fridges to keep meds cold or even watches to know the time to take them. While access to AIDS drugs on the African continent is by no means as easy or as widespread as it is in the developed world, the drugs did arrive.

And today?

An August 2006 report in the Journal of the American Medical Association found a higher level of adherence to antiretroviral regimes in sub-Saharan Africa than in North America. The adherence rate for African study participants was 77 percent. In the North American subjects it was 55 percent.

Back to Aaron Burke. Remember? He’s at the ID Clinic hearing his early numbers. The fuckin’ thing is out of control and the doctors suggest it’s time to start thinking about antiretroviral therapy.

He has already spent time researching the pros and cons of beginning to take HIV meds and he needs to think about it more.

“No. Not yet.”

Three months pass and he gets a repeat of his test results. His immune system strength is still low and his viral load is still up near the 600,000 range. Doctors now “strongly recommend” he start taking meds because, they say, they are unsure of the effects of viral load that high. Burke knows at least one—he has to drink Pepto-Bismol to get through near-constant diarrhea.

Eight weeks later he takes his first pill.

He reads everything on the bottle and gets a glass of water and swallows the pill. And that’s it. It’s no big deal. It’s just like popping the M&Ms he’s been practising with in the lead-up to beginning a life on medication.

The meds take some adjusting to. He has nausea and neurological effects that make him feel like he’s drunk, but then, after a month, he’s pretty much fine.

And just when he’s feeling fine, 30 days after he starts this treatment—one pill at 7:30am, one pill at 7:30pm, one pill before bed at 10:30pm—his immune system strength is low but holding steady and his viral load is undetectable. Remember that word? It was exactly what Aaron Burke was hoping to hear.

“That was the first real positive reinforcement for me,” he says, “that this is going to be OK. This is manageable.”

I’m at the AIDS Coalition in downtown Halifax’s Roy Building, collecting info because I’m about to do this series and I don’t know the first goddamn thing about HIV or AIDS. Not really. I know HIV is carried in blood, semen, vaginal fluid and breast milk and I know the high-risk activities. But basically, my knowledge is self-serving. I know how to best protect myself. And that’s it.

At the ACNS there are comic-strip-style one-pagers, like the one about viral load with a cartoon character clicking his heels together beside the caption, “When your viral load is low, you will feel more healthy.” I pick up thick pamphlets on HIV and mental health and, on loan from the ACNS library, HIV, a 356-page treatment textbook that’s way over my head.

I walk home, wondering: What is the picture of this disease? What does HIV syndrome—the term for the spectrum of illness from transmission to full-blown AIDS—look like?

I start to read. I start to meet with Aaron Burke and other people with HIV and it sinks in. There isn’t a picture of HIV. There is no single image. And I think nonetheless we all have one, tucked away in our minds.

AIDS is not Tom Hanks in Philadelphia. It’s not Rock Hudson. It’s not death or near death. It’s not a wasted face, a sunken body and prominent cheekbones. It’s not used tissues and medication bottles on a bedside table. It’s not the photograph, “Felix, June 5, 1994,” by Canadian artist AA Bronson.

In developed countries such as Canada, some people—some like Aaron Burke—liken HIV syndrome to diabetes, a manageable health condition which could eventually kill you, but hopefully not for a long time.

So you take the meds (that’s getting easier all the time: a twice-daily single-pill cocktail was given tentative approval by the US Food and Drug Administration this year and a once-a-day time-release pill is supposedly on the way soon) and you go on with life. Bam. Done. For now, Burke is in a best-case-scenario place in terms of his physical health.

And he’s come to a place of, call it, acceptance, in his emotional understanding of the disease. He says, “It’s choiceless, right? There is no going back. So, in a sense, it doesn’t matter.”

He’s done so much thinking and he talks so tough, you almost forget Burke hasn’t told his family yet. Or his employer. You almost forget he’s got a stack of issues.

“These two little bottles,” he says, holding the Sustiva and Combivire containers in his hand so I can get a look at the size, shape and colour of the pills, “and all of a sudden it’s not an issue for me to be HIV positive. Physically, that is. Mentally, it’s still a big deal.”

Burke still has sex but doesn’t have a boyfriend and says one of his fears is that he’ll never have one again. (The first time he got close to entering a relationship after the diagnosis was last summer. “He was nice . He didn’t run out of the restaurant screaming. I never heard from him again.”)

He travels to the US for work and has to hide his meds (he won’t tell how) so US Immigration and Customs Enforcement officials don’t find them. A 1983-imposed law bars HIV-positive immigrants and also affects travellers to the US who carry “a communicable disease of public health significance.” Technically, if Burke’s status is suspected he can be asked to submit to a blood test. A positive result can mean he’s turned back at the border. Try explaining that to your co-workers when you’re heading to Tulsa for a weekend conference.

And he’s still not ready to come out fully as a man who has HIV. He’s closer, he says, at our second meeting, but he still hasn’t done it. “The temperature has been turned up on my whole processing of this,” he says. But he’s not there yet. Not quite.

On one hand, Burke is a neophyte, just three years into this thing. But in other ways it’s been a long time—filled with many vials of withdrawn blood, many evenings of research on the computer, many hours with his mental health worker and many almost- coming-outs—since the spring day in 2003 when the whole room went black.

“Let’s not worry about this,” says the AIDS Coalition nurse after she tells him—calmly—he’s holding the unclaimed lotto ticket on an HIV-positive test result. “Let’s just redraw your blood, we’ll rush it through and we’ll get another done.”

And a week later Aaron Burke is walking up Quinpool Road toward his fate.

He goes into the clinic at Planned Parenthood to meet the same nurse he saw at the AIDS Coalition a week ago. He brings a friend for support. He remembers reference materials around in the room, pamphlets and books and swabs. It’s a plain room painted an even plainer colour.

The nurse opens a folder.

You already know what she says next.

And the same thing happens again with the pounding chest and the racing mind. The swabs and pamphlets blur in the background.


Then tears.

Then a thought. I heard if you jump off the bridge you won’t survive.

Then another thought. OK. How can I best manage this?

I’m moving through this pretty quickly. It was actually weeks of coming to that last point. For a long stretch, Burke was fine one moment, breaking down crying the next. “The flavour” of this time, he says, “was freakout.”

But with the benefit of hindsight and without all the drama and embellishments, without the room going black and the Macdonald Bridge looming, here’s what the diagnosis means to Aaron Burke. “Suddenly in the prick of your vein and the reading of the antibodies, you’re on the other side. It’s like, you’re not HIV-positive. You are HIV-positive.

“It’s really, what can I do from this point forward? What are the decisions I make since that day in 2003? right now I can’t get rid of this virus. But there are things I can control. Whether I take my medicines is under my control, whether I eat properly is under my control, whether I engage in self-injurious behaviour is under my control, whether I engage in safe sex is under my control.” Taking a breath, he says, “It’s forced me to realize our lives are our own.”

Aaron Burke went to an art auction in Truro benefiting the Northern AIDS Connection Society one week before our last meeting. An organizer got up to thank everyone at the end. “We each have a role to play in this,” he said. “We can each make a difference.”

And Burke was struck, he says, wondering: “What is my role in this? What am I supposed to be doing in one year, two years, five years, 10 years?”

He says there might be a career change in his near future. “I’m a very passionate person and my work is always a very defining portion of who I am,” he says. “And I think my passions are changing, for better or worse. HIV seems like the next thing I could pour that passion into.”

And what about telling his family?

He’s working on it. Literally, with his therapist. “It’s all still going really well,” he says, “but I’m not in the best space yet to tell them.

“This really is a second coming out. And there’s more energy to be put in to get there.”

Lezlie Lowe is a freelance writer living in Halifax. This profile is the second in a series of three.

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