Giving It Raw
How to Live with AIDS for 25 Years
by Francisco Ibáñez-Carrasco
Francisco Ibáñez-Carrasco is the author of a novel, Flesh Wounds and Purple Flowers (Arsenal Pulp Press 2001); a collection of short stories, Killing Me Softly (Suspect Thoughts Press 2004); and a number of short stories, creative nonfiction, and academic essays published in the U.S., U.K., and Canada. He lives in Toronto where he works as educator and researcher in the AIDS field.
Of Giving It Raw, his newest, unpublished collection of autobiographical essays, Ibáñez-Carrasco says: “I go from science and bureaucracy to the bathhouse in a swish of the pen. The reflections in Giving It Raw are about ‘taking’ it all in, learning from challenges, and ‘giving’ it back to the reader as bite-size, full-mouthed wisdom.”
The following are excerpts from the collection:
When telling your story, there are some inevitable gaps and lakes, and some passages that seem commonplace to you but not everyone has visited those places, seen what you have seen, felt the same dread and same joy. Telling your story never ends, and describing your early days is something you must do time and time again, even as you revise it and life then becomes what you imagine now.
My early life is quirky, and hence, somewhat romantic. Childhood shaped me because I was mostly left to my own devices and even now I seek innovation with makeshift tools. I never knew really about my father ’cause mom didn’t say much and now she has Alzheimer’s. I was an immaculate conception in Santiago de Chile in 1963, emerging on the cusp of modernity in a public hospital out of a knocked-up servant, empleada todo servicio puertas adentro. I grew up in various households in rich, uptown Santiago where my mom worked as a maid, and where I developed precious upper-crust manners amidst the scent of spices, gossip, and handymen in the kitchen. Straddling worlds would later become a skill…
One of my defining breaks from the conventional Chilean social molds occurred in 1980, five years before coming to Canada. On a dare, I had taken the national aptitude examinations, the ones after high school to qualify to go to a university and I barely passed the mathematics, physics, and chemistry section; the “macho men’s knowledge.” However, I scored really high in the humanities section, the feminine subjects; and with a large student loan and heavy stack of meal vouchers from the social worker, I attended Universidad de Santiago to study Lincenciatura en Inglés, a Bachelor’s program which included teaching English as second language. English, it was not as ravishing as French, but it was a pragmatic choice…
I was nimble in small cars and between 1980 and 1985 playing girl to the outsized and insensitive egos of macho men, who can imagine how many limbs can be packed in a Fiat 600, a Citroën, or Austin Mini. I did serve my country, like many other queers did, in silence; and no one has still written the hagiography of queers in Pinochet’s dictatorship, our contribution to keeping so many soldiers’ testosterone in check. Unlike Argentina during their 1970s and 1980s dirty war, gay men were not entrapped and killed unless they had leftist political affiliations. Chilean gay men were harassed in the underground during the dictatorship. It created a peculiar bubble for faggots as it was detected by Tim Frasca in his book AIDS in Latin America (2005). Tim, an accomplished American journalist, would be one of the few openly gay Leftist gringos living in Chile during the dictatorship and a cornerstone of the HIV movement of that country. He was influential in my learning to shape my thoughts about being gay in a dictatorship in English…
Toward the mid-1980s, my close gay friends and I fled repressive Chile to live the Grace Jones’ disco-fueled dreams in New York City. One by one, we exported each other, saving money, buying airline tickets that put us in transit through the U.S. or Canada, paying for visas on the black market, planning our landing and our getups in the land of plenty. In December 1985, I arrived in Vancouver, British Columbia, with seventy-five dollars in my pocket to cross the (at that time) easy border with Washington State, and overnight—yes, overnight—I decided to stay, pure intuition.
Six months later, in 1986, Dr. Bruce Douglas told me I was one more HIV case among hundreds. I walked through the city with quiet in my head (a rare occurrence) echoing the deafening silence about HIV in a city populated by bare-bones gay men shuffling their feet to the fledgling political AIDS service organizations or to a medical appointment. Stereotypes carry a pit of truth at their core: Latinos, as a generalization, are passionate but our passion can be fickle, both can save you from the fangs of death. I didn’t suffer in silence, I spoke out, I wrote and I flailed, and this is what made me an AIDS activist. I learned about the complex queer politics and pride, that gay men may be well legally protected but publicly vulnerable to stigma, neglect, contempt, and violence from others and even from each other’s apprehension. I learned the drudgery of community work taking shots in the trenches. They said that queer liberation was here; I had my doubts. To me, a wetback from the South, it was all just a little bit of history repeating…
As a patient I learned to be an accomplished minor star on glum runways, especially in ERs and hospitals, where you compete with many other diseases and sad stories. The tenets are simple: dress cleanly (they shouldn’t but they judge), leave your attitude at the door (you’re not special), and it takes three to six hours to get through an ER visit (it’s a test to your humility; you are to be patient—get it?). If you are conscious, use small openings to tell them who you are. They shouldn’t, but they treat different people differently, and you’ll need the advantage when cajoling for painkillers. I have always felt that ERs and airports are similar, places filled with strangers, anxiety, scrutiny, and a sense of doom, a sense that you might not be going anywhere at all.
I survived 1994, the wildfire of Kaposi’s sarcoma, the jungle of catheters, the tidal waves of Vinblastine and Vincristine, names of wild girls, and the volcanic heat of radiation—I fought a global cataclysm. Miraculously, a phosphorescent chemical deity, I walked out of St. Paul’s Hospital to hide in a building on the East Side of Vancouver, and end my days. My everyday life was studying, learning to work in community in Vancouver and in national AIDS organizations, doing some public radio (no one could see my disfiguring KS), and writing a PhD thesis, a petulant swan song. Oddly, in my efforts to retreat, I often seemed to accomplish the opposite and it was during this period that I made long-lasting friends.
HIV and safe sex were my specialization, theory and practice; it was odd then, now completely invaded by the statistics of epidemiologists and public health. I didn’t believe in safe sex then, and I still don’t believe in it now, not in the fastidious, indoctrinating faux way that gives us easy rules to follow. Who the hell has ever used a dental dam to eat ass? Speaking of which, through these travails I learned to fist real good, and to find weird lust in disfigurement—paraphilia they call it. I smoked tons of weed and I fucked in the dark to hide the KS scarlet letters on my entire body and the permanent catheter implanted in my chest. In makeup, I became a drag queen for AIDS fundraising. I was beautiful in drag and replayed all that was feminine I had learned from Latinas. I planned euthanasia. Unbeknownst to my friends, I joined the Hemlock Society, read Final Exit, and talked to a confidante who would help me when I reached the point where illness would impede me to go through with it. I’m not sure how I hung on day-by-day for over three years, ever the obstinate cow. Then, in 1996, HIV antiretroviral treatments were rolled out in Canada. I was saved by a new bell and started to live my third life—albeit under a huge credit debt.
In 1997 I met John with whom I would spend the next 14 years, a wounded soul with a checkered past, the man that puts in me all that is human and reasonable, hope and resilience, and makes me a better person. Along the way, I lost a couple of friends who couldn’t tolerate the idea that my life no longer depended on them. I’m not saying they didn’t help or I’m not grateful, but pity smothers and confuses. It surely took a village of nurses, doctors, complementary and alternative practitioners, volunteers, and friends to keep me alive; this is why I believe in nonprofit organizations and extended family. I lived on emotional credit that I would have to pay dearly with accrued interest ten years later. When the twin towers were coming down in 2001, John and I set up home on the East Side of Vancouver and I went back to work full-time. I wrote a great deal then, and my gay erotica began to get published. I thought life would be easy from then on.
In case you didn’t know, HIV still leads to AIDS and it is still fatal. Gay men are disproportionately infected in North America, but the old-fashioned opportunistic illnesses such as pneumocystis pneumonia (PCP), the cancer of Kaposi’s sarcoma, cytomegalovirus, or stomach bugs like cryptosporidium are not killing us as much as a complex combo of long-term effects caused by HIV antiretrovirals. The celebrated “cocktail” is simpler, but in the long run, we pay the price in heart, liver, and kidney failure or musculoskeletal conditions such as osteoporosis. The new generations living with HIV will probably not suffer the disfigurement of abnormal distribution of fat in their bodies or sunken cheeks, lipoatrophy, the “face of AIDS,” but they will contend with mental health and neurocognitive side-effects still unknown. Today, in 2012, the generation reaching their fifties and sixties who were betrayed by their bodies still feels fear and shame and the historical sting of public neglect. Many of the gay men among them get co-infected with hepatitis C through sex, and no one is doing much about it.
Having resisted all textbook edicts about HIV, medical and sociological, they have come back to bite me in the ass. What they say in their fastidious research reports truly happens to us and I hate that truth. AIDS isn’t now a pandemic that affects everyone; it is a chronic illness, a parasite leeching off the disparity between genders, social minorities, geographical locations, and privilege. But most of all, AIDS is still a disease of sex stigma and, legally, non-disclosure of HIV status before engaging in a sexual act that represents a significant risk of HIV transmission is criminalized in Canada (without clear definition of what sexual acts carry significant risk). Not good. To paraphrase an old AIDS maxim: The sexual acts of gay men with HIV may have catastrophic private consequences. Gay men’s rights to private acts are limited, I think. But they say that liberation is near. To me, it seems like a little bit of history repeating….