TWENTY-EIGHT YEARS AGO, Tez Anderson left his apartment in the Castro, walked four blocks to a local clinic and was told he had HIV.
“Going up the hill back home, I remember how vivid the colour of the sky was, how bright the sun was, how green the fennel on the steps to my staircase was ... It felt like the world was electrically charged,” says Anderson, now fifty-five. “But the funny thing is that I’ve talked to other people about that day, and a lot of them have similar stories. I guess looking back on it, it was just a form of shock.”
In 1986, Anderson was given between nineteen and twenty-four months to live. Around him, friends were dying fast. “It was like living in a war-zone. You would see people on the street who were hearty one day, and then you’d see them looking a little sicker, and then they’d be on a walker, or with someone, or carrying around an oxygen tank. And then they’d disappear.” In his welcome speech at the International Conference on AIDS in 1990, San Francisco Mayor Art Agnos said that by that year, more residents of the city had died from AIDS than San Francisco lost in all major twentieth-century United States military conflicts combined.
The years following his diagnosis put Anderson in a state of suspension. Planning for the future became impossible. He bought a house with a boyfriend but put the house in the other person’s name, figuring it would make things less complicated when he died. He stopped saving money and read books about the dying process. But twenty-four months came and went, and he was still alive. “I adjusted my time span every two years,” he says. “Every couple of years I would go back to the doctor and say 'It’s been two years. I’m not dead yet.’ And they would say, 'Well, probably another two years.’” Anderson’s borrowed time outlasted his relationship. His boyfriend kept the house.
Anderson was still living in limbo in the mid-nineties when protease inhibitors hit the market. Suddenly, survival rates among HIV patients soared. In 1998, the front page headline of the Bay Area Reporter read, “No obits.” The accompanying editorial was titled, “Death takes a holiday.”
Told that he should be happy he wasn’t going to die, Anderson couldn’t believe in the reprieve the drugs granted. Then, in 1999, his partner Gary succumbed to HIV. “Gary was sick for nine months,” Anderson says, “And it was exhausting. It was totally, utterly, mind-numbingly exhausting, especially when it felt like a lot of the community was having a party.”
Anderson felt alone in his darkness, but his experience wasn’t unique. The treatment regimens for those living with HIV were likened, by experts, to being as stressful to coordinate as the schedules of air traffic controllers. “Perhaps,” one patient wrote in Arts & Understanding, a magazine founded in response to the loss of members of the creative community to HIV, “our next problem is not going to be coping with death, but coping with the rest of our lives.” Most physicians reported that an average of 25 percent of their patients weren’t properly taking the very miracle cure they had been wishing for just a year earlier. One group in Dallas reported a non-compliance rate as high as 75 percent. In a study conducted at Stanford University, patients taking the drug Saquinavir—a protease inhibitor—were given their medication in a bottle which contained a computer chip to track every time it was opened. Investigators found, consistently, that patients were returning the prescriptions for refills even though the chip showed that doses were being skipped.
It used to be that people like Anderson died, and died quickly. Now, more than any other time in history, people are surviving life-threatening illnesses. In the 1980s, survivorship programs for those with HIV/AIDS and cancer were non-existent; but as mortality rates diminish, an unexpected demographic emerges, with unique needs. Gripped by psychological, social, economic and physical challenges, those who live through, and with, serious illness face staggering obstacles, and must navigate a system that is not ready for their survival. The narrative of survivorship suggests that those who are lucky enough to live should move on from being sick. But the reality of life after, or with, disease can be much more complicated.
BY 2008, Anderson had sunk into a severe depression. For a full year, he contemplated killing himself, thinking each day about a way to make it look like an accident. He dreamt of being chased, of being shot at in underground parking lots, of being buried alive.
He was at home one night watching television when a panel of war veterans came on the screen, discussing their experiences with post-traumatic stress disorder. Anderson broke down crying. Something had clicked and he brought it up with his therapist, who encouraged him to pursue it further. As he began to talk to others, he noticed that feelings of isolation, depression and anxiety were common in long-term survivors. Then, the suicides started up.
In quick succession, several long-term HIV survivors took their own lives. In December 2012, one of the activists instrumental in ensuring protease inhibitors were released to mainstream markets, Spencer Cox, stopped taking his medication. The New York Times referred to it as “pill fatigue.” He would be dead by the new year. Jonathan Klein, who ran a travel agency in the Castro and was a leader in international gay and lesbian tourism, had been struggling with depression and housing problems. In April 2013, he threw himself off the Golden Gate Bridge. The community wasn’t just losing its members; it was losing its spokesmen. “When people are killing themselves because they can’t imagine surviving,” says Anderson, “that’s something that is equally perilous, to me, as the virus itself.”
WHEN ANDERSON WAS DIAGNOSED IN 1986, HIV was a death sentence predominantly given to young, gay men; now, in North America, it is a chronic illness that increasingly affects an aging population. In Canada, the number of older people with HIV has doubled in the last twenty years: about one third of people living with HIV in high income countries are fifty or older. By 2036, it is estimated that one in four people with HIV in Canada will be over the age of sixty-five.
HIV ages an aging population faster. Health problems usually associated with senior citizens, like cardiovascular disease, osteoporosis and kidney and brain issues, can appear upwards of twenty years earlier in people with HIV. One study found that older people with HIV have five-fold higher odds of developing memory deficits. It is not uncommon for the brain of a fifty-year-old with HIV to look like that of a healthy person who is fifteen to twenty-five years older. “It’s not going to be a pretty picture,” neuropsychologist Sean Rourke told the Toronto Star. “Most people are alone and suffering with these complications.” People who are in their forties or fifties experiencing the health problems of those in their sixties or seventies present a unique set of challenges when it comes to accessing care. The needs of aging HIV patients make places like Toronto’s Casey House, a specialty HIV/AIDS hospital, incredibly important; patients in traditional care facilities report being stigmatized by both fellow residents and caregivers.
Many older people living with HIV, like Anderson, had never prepared to make it to old age, forgoing financial planning or career preparation because they didn’t think they would live to see a day when it would matter. The pressure of financial instability can add a layer of isolation, further exaggerating the fact that older people with HIV deal with higher rates of depression and loneliness, and are more prone to suicidal tendencies. One survey of 914 HIV-positive older New Yorkers found that two-thirds of respondents were moderately or severely depressed.
“Our traumatic experience with HIV was twenty years of people dying around us, of being sick ourselves, of us planning to die ourselves,” Anderson explains. “I don’t think anyone’s really stopped to think about the toll that it took on those of us who lived through it ... It took a lot of us a long time to understand that our story had changed from being dying people to people who were going to live for a long time.”
Survivor syndrome was first documented in 1964, observed in Holocaust survivors who were killing themselves years after the trauma of the Second World War. Anderson saw a parallel between their experiences and the trauma the gay community went through in the eighties and nineties. “We were the pansies, we were the fags, we were looked upon as the weak ones, you know?” Anderson says. “Fuck that! We went to hell and back and we’re still here.” In January 2013, following Spencer Cox’s death, he coined the term AIDS Survivor Syndrome and started a group called Let’s Kick ASS. (“When I first came up with this,” he says ruefully, “I thought 'I can’t call something for a gay group ASS.’”) The group accounts for the only non-wartime documentation of survivor syndrome.
“AIDS, LIKE CANCER, does not allow romanticizing or sentimentalizing,” Susan Sontag wrote in AIDS and Its Metaphors in 1989. “Perhaps because its association with death is too powerful.” The work was a follow-up to a three-part treatise originally published in the New York Review of Books in 1978 and later released as its own collection, Illness as Metaphor. Written at a time when cancer was widely perceived as a disease of suppressed emotions or inhibited passion, Sontag, then a cancer patient, showed how the accusatory metaphors used in medicine not only added greatly to the suffering of patients, but also prevented them from seeking proper treatment sooner. “The very reputation of this illness added to the suffering of those who had it,” she wrote. A decade later, following the outbreak of the HIV/AIDS pandemic, Sontag extended her thesis to the highly stigmatized sickness. “AIDS has helped to divest cancer of much of its aura of shame, of the unspeakable.”
The dangers of allegorizing illness and ascribing personal traits onto the patients who experience it can be extended to the language we use to describe survivors. Terms such as courageous, strong, triumphant and positive have all become part of the cancer survivorship lexicon.
In medical terminology, cancer survivor defines anyone at the point of diagnosis, meaning that you are a survivor until, one day, you are not. In our cultural imagination, a survivor is someone who is better for the journey of their illness; stronger, healthier, with the bad stuff behind them. Very particular language of survivorship—filtered through ideas of bravery, perseverance and fighting—began to emerge in the seventies and eighties, when studies were first being published which argued that positive thinking made a difference on cancer survivorship. These studies have been discredited, but the conversation remains the same.
The 2011 documentary Pink Ribbons Inc. showed how corporations have used increasingly upbeat imagery and language related to breast cancer awareness to sell anything from yogurt to dishwashers to guns. These companies have reinforced the marketable image of a survivor: determined, confident, the disease left beaten in the dust. “There [is] something about the survivorship movement,” says Dr. Madeline Li, a cancer psychiatrist and psychosocial oncologist at Princess Margaret Cancer Centre in Toronto, “that’s all about positivity.” Dr. Li says the mentality invalidates the ordeal that patients have been through. Distressing feelings are a normal part of the recovery process. “And 'survivor,’” she says, “doesn’t really capture that.”
IN THE EIGHTIES, Canadian hospitals had not developed cancer survivorship programs because survivorship wasn’t part of the disease’s nomenclature. Now, 63 percent of Canadians diagnosed with cancer are expected to survive for five years or more after their diagnosis. One out of forty-one Canadians diagnosed with cancer in the past ten years is still alive today.
Kim Adlard is one of these Canadians. Four years ago, she went in for some routine blood-work with her doctor, and was found to have acute lymphoblastic leukemia. She was hospitalized immediately and told her that her treatment would last anywhere from two-and-a-half to three years.
As she began her treatment, Adlard was financially stable; working as a manager of funds for a community organization, she earned over sixty thousand dollars a year and had health insurance. But her benefits ran out before her treatment was finished. She used up both her vacation and sick time and, even though she was still receiving medical care, was unable to take any more time off work for her health. She had stopped accruing wages, and so she tried to return to her job in a reduced capacity. But, still under the effects of her medication, her productivity suffered. In the spring of 2012, the company was restructured and her position was eliminated.
Even though Adlard was able to negotiate some insurance coverage as part of her severance and sign on to a private plan, her costs soon became overwhelming. As she required more time in treatment, she watched her savings, retirement fund and pension disappear. “Try looking for a job as a cancer patient, you know?” she says. “I was living in fear of losing all of that and then I ended up losing it anyways.” She now lives on less than a thousand dollars a month of disability support.
Dr. Li considers the hidden financial catastrophes of cancer to be just one of many consequences of the health care system’s weaknesses when it comes to dealing with survivors of the disease. It’s especially problematic because being treated for cancer in Canada costs more now than it has in the past. There has been a shift from hospital-based care to ambulatory care, and people must cover the costs of drugs provided outside of a hospital setting. About three-quarters of the new cancer drugs in Canada are taken at home. As a result, one in twelve Canadian families are said to pay drug costs amounting to more than 3 percent of their net household income. Though British Columbia, Alberta, Saskatchewan, Manitoba and Quebec all have some form of comprehensive coverage for eligible cancer drugs taken at home, the remaining provinces and territories—accounting for 46 percent of the population—do not. Instead, they have public drug plans, which you must apply for. Coverage is based on financial stability. This means that patients still incur costs of up to $6,000 a year.
“There are a lot of gaps, even within this incredible system that we are able to access, and those gaps are really devastating,” Adlard says. “When you think of people being sick and poor, you often connect with the States and other countries, but it’s happening in Canada.”
DIAGNOSED WITH LEUKEMIA AT TWENTY, Raymund Ong* had been preparing for midterms at the University of Guelph, thinking that the abdominal pain he was beginning to feel was a muscle strain from the gym. Two weeks after he started chemotherapy, Ong developed a blood clot on his brain. The clot gave him a stroke and paralyzed him on his left side. “They initially offered me physiotherapy while I was in chemotherapy, but I couldn’t keep up with medication as well as physical activity. So I declined the physiotherapy,” he says. When he finished chemo, he looked into starting his physiotherapy, but he didn’t have the insurance for it. Two years later, Ong was told his cancer was in remission, but his family was forced to pay $8,000 out-of-pocket for an intensive physiotherapy program to help him recover from the paralysis. (He recovered functionality, but still has nerve damage which hinders his coordination.) To make matters worse, he was still feeling the after-effects of his cancer treatment. From joint pains and nausea to mood swings, he felt disassociated from his body and began to shut himself off from those around him.
Adlard, who is currently fundraising to start OneAccessSpace, a digital resource for people affected by cancer, experienced great psychological distress from being sent to the ECU on the verge of death from an opportunistic infection after having a port installed in her chest for chemotherapy.
Just as HIV patients find that living with their cure can be a life-altering challenge, cancer patients must manage the effects of their illness well after their treatment has ended. Post-radiation fatigue syndrome, known broadly as cancer fatigue, is the most common health issue for cancer patients. It can go on for upwards of five years after treatment, and even become permanent. “Sometimes you have to put up a front,” says Gabby Pavao, a mother of four diagnosed with advanced breast cancer in 2010. “Especially for your family. You have to be strong for them, right? You have to show them that it’s fine, but it’s not.”
LONG-TERM SURVIVORS are susceptible to mental health challenges, but the positivity of the popular survivorship movement doesn’t create space for them to experience these emotions and recover adequately.
Every doctor I spoke with for this piece said that the tyranny of positive thinking carries through today, and that there was a common belief among their patients that their psychological states had caused their cancer and could also help cure it.
This attitude can set patients up for a more difficult time coping post-treatment. Dr. Li worries that some patients choose not to disclose their psychological distress to their oncologist, out of a fear that they may be less aggressive in their approach. (Literature shows that oncologists miss signals of distress in their patients 70 percent of the time.) Dr. Li’s research has shown that there is a biological correlation between the effects of cancer and the mental health of patients. “The physical as well as the psychological stress of cancer can work through your immune and alter the inflammatory molecules in your immune system that then change neurotransmitter levels in your brain and cause depression,” she says, explaining that the raised level of proteins called cytokines create a phenomenon known as sickness behavior, which can lead to depression and anxiety. “I try to tell people if you get depressed, it’s not a failure to cope. It’s a side effect of treatment, like pain and vomiting, and we need to treat it.”
RECENTLY, A STUDY IN THE UNITED KINGDOM found that the majority of respondents did not endorse the term cancer survivor, for reasons which varied from not wanting to take on a spokesperson role for the illness, a feeling that it suggested survival was based on personal characteristics and that this label implied they were free from recurrence.
For Scott Secord, of the Canadian Partnership Against Cancer, the cultural context of the survivor label reminds him of the term mental retardation: a label that used to be acceptable but is weighed down by stigma. Adlard holds a similar point of view: “It’s a double-edged word,” she says. “Like, how do you classify people who die? Are they just, not-survivors?”
“It’s sad, in a way, that a lot of this is really up to luck,” says Camilla Zimmermann, head of palliative care at Toronto’s University Health Network. Some people die, she says, “and some people don’t. And it’s not because the people who don’t die prayed harder or were braver or whatever. It’s something to do with the cancer cells and how they’re responding to the treatment.”
Of course, some patients do find strength in the survivor concept. While Adlard and Ong admitted to being uncomfortable with its application, they said that they used it to connect with people to tell their stories. Pavao readily endorses the word by reconfiguring its cultural definition. “To me, survivor is waking up every morning and taking it day-by-day and having the ability to go to work,” she says.
In some ways, the survivor mentality is not all marketing. The imagery of moving forward echoes a concept called post-traumatic growth, a developing theory which posits that if trauma is met head-on with good psychosocial support it can actually lead someone to be in a better state at the end of their sickness than when they were diagnosed. Some patients report that dealing with cancer allowed them to realize what is important in their lives. (To distinguish this from the positive thinking handicap, post-traumatic growth argues for counseling and reflection.) The concept is still being researched, but the doctors I spoke with did say they see it in their patients at a clinical level.
Adlard, Ong and Pavao all attend meetings at Gilda’s Club in Toronto, which provides group-based counseling for patients as well as their families. Pavao, a devout Catholic, likened it to a second church. Listening to them, it is easy to hear the importance of psychosocial care. But resources like Gilda’s Club are still unavailable to most cancer survivors.
“There’s a lot of money that goes into active treatments, and rightfully so,” Dr. Li says. “But survivorship treatments are very poorly funded right now and we need a lot more research into rehabilitation strategies.”
LAST SEPTEMBER, Anderson’s Let’s Kick ASS group held its first town hall, calling for survivors to meet up and share their experiences. Anderson expected thirty or forty people to show up; over two hundred did. Participants discussed the epidemic, ways to move forward and posted their challenges on a wall: survivor’s guilt, trapped on disability, housing, representation. Anderson describes it as a homecoming. “I overheard people say to one another, 'I thought you were dead.’”