Alive and Kicking
Why living with AIDS is every bit as complicated as dying from it
BY Matt Semansky
Illustration by Joshua Leipciger
Even when we were little kids, I often joked to my older brother that he could pass for a chemotherapy patient. By the time he was 30, his skeletal six-foot-two, 130- pound frame crowned by an expanding bald patch, he had the look down pat. So when Neil joined my mother, stepfather and me for a family dinner one night looking gaunt and pale, none of us suspected anything was wrong. As we sat down, Neil took a deep breath and uttered the kind of sentence that can only preface bad news: “Guys, I have something to tell you.”
Minutes later, he and my parents cried while I stared at my plate, stunned and numb, my generous pile of chicken stir-fry looking suddenly plastic and inedible. All of the evening’s digestion would be mental, and the facts made for a cold and bitter meal. I shuddered as Neil told us he was suffering from pneumocystic pneumonia, an opportunistic infection that most often strikes the elderly or the very young—people whose immune systems have been severely compromised.
I bit my lip as Neil explained that his CD4 count (the number of disease-fighting white blood cells in his body) was down to 20, less than five percent of what is considered healthy. But these were details, medical factoids that were dwarfed in impact by the simple horror of my brother’s next words: “I’ve tested positive for AIDS.” At the time—an icy Tuesday in February 2000—my family equated those four letters with certain death.
What we never could have guessed is that five years later, Neil is not only alive but actually in better shape than he was before his diagnosis. Regular trips to the gym have added 10 pounds of lean muscle to his bony frame, and his CD4 count has rebounded to an almost-normal 480. On top of that, he has even quit smoking. But there is perhaps no better indication of his improved health than Riley, the Jack Russell puppy that licks at my face as I drive Neil home on a cool early-spring evening. At 35, my brother has found purpose in being a father to this doe-eyed pup and, like most parents, he delights in finding similarities between himself and his progeny.
“I’ve decided that Riley has an AIDS-y face,” he announces, flashing the self-deprecating humour that has helped him laugh his way back from the edge of the grave. My brother had the relative good fortune to test positive in an age when the word “positive” is starting to lose some of its deadly negative connotations. But because modern medicine is still far from a cure, Neil is one of a generation of AIDS survivors discovering that living with AIDS is every bit as complicated as dying from it.
Brian Ellison was among the first to experience that change. In 1994, five years after he tested positive for HIV, his failing health forced him to take up residence at Casey House, a palliative-care centre in Toronto for people with AIDS. With little to lose, he fought for an experimental (and, at the time, illegal) treatment called Highly Active Antiretroviral Therapy (HAART). The combination of pills, which inhibits the virus’ ability to reproduce, saved his life—as it has done for thousands of others since its widespread introduction in 1997. HAART has transformed victims into survivors, but many of them live below the poverty line, with uncertain futures. “I was supposed to die, but I didn’t,” the 52-year-old Ellison says. “So now what do I do?”
Ellison is not the only one asking that question. According to the most recent report from the Public Health Agency of Canada, 56,000 Canadians were living with HIV or AIDS in June 2004. And while AIDS is still a killer, a positive test is no longer an automatic death sentence—there were 1,687 reported deaths from AIDS-related illnesses in Canada in the post-HAART era, compared with 1,499 in 1995 alone.
As fewer people with HIV and AIDS face imminent life-or-death struggles, more are concerned about their quality of life. The disease still carries a negative stigma, and this, combined with the experience of watching close friends die from AIDS-related causes, has made Ellison cautious. “It’s hard to make new friends,” he says. “It’s hard to get involved with new people when they’re just going to die. You close down.”
“Some of these people have barbed wire around their hearts,” says Yvette Perreault, program director for the AIDS Bereavement Project of Ontario and a 20-year veteran of AIDS community work. “If your heart has been kicked to shit with all that loss, opening up to another human being and letting them in is going to be a huge deal.”
While the Bereavement Project once focused only on helping people cope with the death of loved ones, its mandate now includes helping clients deal with the challenges of getting on with their lives. “People don’t know if it’s OK to want more, whether it’s OK to become engaged with life again when they’ve got diarrhea three hours a day,” says Perreault. “My answer to them is yes. If you’ve only got six good hours, make them the six best hours of your day.”
Many people with HIV and AIDS feel that engagement with life includes a career, but those who do have found numerous barriers to employment. Chief among these is the fact that by returning to work they risk losing government support that covers the high cost of medication. Ellison and his partner, Tony Werth, who is also HIV-positive, rely on two sources of income—Ellison’s Canada Pension Plan (CPP) payments from his years as a senior onboard service coordinator at VIA Rail in the 1980s and Werth’s Ontario Disability Support Program (ODSP) subsidy— to cover a combined monthly drug bill that runs $9,000.
The leftover dollars barely cover the couple’s basic necessities, and government regulations restrict their ability to supplement their income. As one of roughly 1,600 Ontarians who collects ODSP support for HIV and AIDS, Werth can earn only $160 per month on top of his benefits, which include both an income support cheque and a drug card for his medications. After this cutoff point, the province can ask for up to 75 percent of what he makes. Meanwhile, Ellison’s CPP payments will likely stop if he remains in a full-time position for more than three months, and when he turns 65 he won’t be eligible to receive them at all. “I have nothing banked for my future,” says Ellison, “so as costs of living go up, I live with that fear of ‘What about tomorrow?’”
Though employers cannot openly discriminate against a person with HIV, they can be skittish about hiring someone whose condition may cause him to be absent every other week. Ellison’s troubles are compounded by the fact that he has not held a steady full-time job since leaving VIA Rail in 1988. Accordingly, his first order of business is to determine an appropriate career goal. “I’m trying to figure out where I fit in the working world.”
After a year and half of looking he has yet to find the right fit. “Obviously, if someone’s been out of work for seven, eight, nine years, it’s going to be very difficult,” says Don Phaneuf, an employment consultant for Employment Action, a service offered by the non-profit AIDS Committee of Toronto since 1999. Phaneuf assists clients with all aspects of returning to the workforce—everything from resume-building to matching would-be employees with potential employers. His first order of business with each client is to map out a realistic career goal. “For many people, I think they get caught by surprise. Motivation plays a key role.”
Ellison is motivated, but skeptical. “I’ve heard as many bad stories as good stories,” he says. Specifically, he feels that Employment Action rushes its clients into career paths that aren’t suitable—paths dominated by low-paying jobs in telemarketing and other dead-end fields. And after several preliminary meetings with Phaneuf yielded neither a job interview nor a clear career direction, Ellison decided to put Employment Action on hold to do his own networking. While he says he may one day return to the program, his experience thus far has left him less than hopeful. “I never saw any proof that there were jobs out there for me,” he says.
Though the job search is almost as arduous as the physical recovery, Acanit Nbeya (not her real name) proves that there is hope for survivors. The 42-year-old mother of five emigrated from Uganda 13 years ago, and tested positive for HIV in 1999. Her first concerns were for her children, and though all five tested negative for the virus, she then had to face the grim prospect of leaving them without a mother. “You think you’re going to die,” she says, recalling her initial reaction to her diagnosis. “And because I was worrying so much, I was not doing so well.”
A stocky 200 pounds at the time of her diagnosis, Nbeya had both the physique and the determination to ward off the effects of HIV. These qualities, along with her HAART regimen, have allowed her not only to survive but to carry on with life. A hairdresser for four years before she got sick, Nbeya returned to school part-time after she began HAART and received a certificate in personal services work a year later. That led her to her current job at a United Way-funded community centre in downtown Toronto. “I’m working with people who have HIV, the homeless, people with disabilities,” she says. Her new position removes the need for income support from ODSP, although the province will continue to pay for her medications for up to a year until she becomes eligible for her employer’s medical plan. The job also gives her a weapon to fight what she says is the worst symptom of HIV: “If you are alone in the house and have nobody to talk to, that is the worst kind of sickness.” What’s more, her involvement with people in need offers Nbeya a fresh perspective on her own medical situation. “There are other people worse off,” she says.
But Nbeya’s triumphant story remains an exception to a discouraging rule. Of the roughly 120 new clients Employment Action sees every year, less than one-quarter of them obtain fulltime work. Don Phaneuf points out that his primary mandate is to help people with HIV develop a career plan, not to get them a job. He blames the relatively low success rate of Employment Action on a variety of factors, the most obvious the mercurial health of his clients, many of whom begin the program with every intention of following through. In addition, he says, prejudice remains a major concern. “Homophobia and discrimination are still big issues, not just for people returning to work but for anyone with HIV or AIDS.”
What’s more, many AIDS survivors looking to rebuild a career have to battle their own unrealistic expectations. “For a lot of people who can’t do what they used to do because it’s too stressful or too physical, they need to look at a career change. And that can be a bitter pill to swallow, because it usually involves developing experience through a combination of volunteering and entry-level jobs.” As for educational opportunities, people with HIV are largely limited to short-term vocational courses at private colleges—ODSP will not pay for a recipient’s schooling at post-secondary institutions that receive funding from the Ontario Student Assistance Program.
But no one barrier to employment carries more weight than the fear of losing drug benefits. Although ODSP has acknowledged the need to allow its recipients to earn more supplemental income, Phaneuf doesn’t expect the government to find more money in the coffers of a system that already pays out roughly $20 million in annual benefits to people with HIV and AIDS. Phaneuf would, however, like to see HIV and AIDS addressed as part of a separate category of disability. “There are a number of disabilities, like HIV, that we call episodic. The system doesn’t allow people to work for a while and then not work for a while. You’re either disabled or you’re not, and there’s a lot of advocacy going on to try and change that.” Phaneuf continues to be one of these advocates because he believes that people with HIV have the same right to self-determination as everyone else. “Not everyone with HIV can or should go back to work, but they should have that option.”
Though the survival rate is rapidly increasing, it would be dangerous to assume that AIDS has been cured. As Ellison points out, the fight is far from over. “One thing that doesn’t work with this disease is complacency, and I think complacency has put many people in the ground.”
He feels such complacency arises partially from the fact that HAART is commonly referred to as a “cocktail,” a moniker that makes him bristle. “I don’t take cocktails. I take pills.” HAART is chemotherapy, and different users experiment with different drug combinations, trying to minimize side effects like fatigue, insomnia and digestive problems. Even if they were served in a glass with a colourful parasol, the 18 to 25 pills Ellison takes each day don’t exactly leave him in a partying mood. Neither do public health statistics, which suggest that up to 4,000 Canadians with HIV have become resistant to existing HAART medication. New forms of treatment are being developed, but these new experimental drugs are not covered by provincial health insurance.
For his part, my brother tends to ignore these thunderclouds. AIDS is a fact of his life, but he refuses to obsess about his illness or become “professionally positive.” Neil currently spends his days taking care of himself and his puppy, and will occasionally paint a friend’s apartment in exchange for a free meal or two. At the moment, he has no plans to seek full-time employment, but I suspect that will change in the future.
Before testing positive, Neil was working as a billing clerk at Sunnybrook Hospital, spending each day cutting the paper mountains on his desk down to size. I have no doubt that Neil’s work ethic and determination will one day result in a return to the working world, but for now he uses those qualities just to get by on a day-to-day basis. This is fine with me. Since he got sick, my brother and I have come to place a higher value on each other’s company, and even though the war against HIV and AIDS continues, we are both grateful for the battles that have already been won.
