Quit your job, go home and prepare to die: Surviving the AIDS epidemic

At 14, I thought there was something wrong with me. I had a girlfriend, I liked her company, but there was something physical that wasn’t right. This was during the 1970s in a small mining town in Northern Ontario. No computers, no talk of homosexuality and no sex education in schools.

I confessed to my hockey coach that when I was with some other men, there was an attraction. I didn’t know it before, but my hockey coach was gay. He took me to this big city called Toronto to explore my sexual identity. In Toronto, I fell in love with a man who taught me all about the gay lifestyle.

When I went back to my hometown, Timmins, to pack up my things, I was discriminated against because of people’s lack of knowledge about homosexuality; they thought I would come on to them. My old friends didn’t even want to enter my home.

By 1981, this new disease, this “gay cancer,” swept through predominately gay male communities and killed people within months. It was terrifying. Scientists knew nothing about it.

In 1986, I left Toronto and moved to New York. I fell head over heels for a man in 1988. We wanted to make sure we didn’t transmit HIV to each other, so we got tested. At the time I felt as healthy as ever; I jogged through Central Park and cycled through the city.

However, my test came back: HIV positive.

I saw a “breaking news” segment saying let’s quarantine all people with HIV, lock them up and keep them away from us. Some people with HIV lost their homes; some lost their jobs; some died by suicide.

The illness didn’t hit me right away, but after three years the symptoms were becoming worse. I lost energy and caught new infections left and right. By 1991, I had full blown AIDS. I was given two years to live. I quit my job, isolated, wrote my will, and prepared to die. I said goodbye to my loved ones. It was the worst, most heartbreaking year of my life; having to tell my mother, sisters and brothers that I was dying.

HIV attacks the immune system differently among various people. My first partner became blind, developed waistings, and died by suicide. My second partner developed Kaposi’s sarcoma and died from AIDS complications quickly.

My nine friends in Toronto all died from AIDS by 1998.

Most physicians didn’t want to treat people with HIV. Except I found this amazing physician. I asked her, “Why are you taking on HIV patients?” She said, “I’m your age. I want to know why you’re dying.”

I moved back to Toronto where homophobia was as rampant as ever. “Gay bashing” became a hobby for a minority of straight people. I was walking with my partner on the sidewalk of a busy street and someone tried to throw him into moving traffic.

My health deteriorated. I was connected to my primary caregiver and HIV specialist, Dr. Gordon Arbess, who still sees me to this day. I receive total care. Blood drawn every three months, T cells and viral load checked four times a year, and check-ups on other organ systems as well.

Many of the experimental drugs I tried with the hope of symptom relief caused permanent damage. To this day, I live with chronic neuropathy; I can’t feel my hands, my feet sting and I don’t have proper balance. At one point, I was taking 80 pills a day, just hoping that something would work. Then protease inhibitors came out and it was a gamechanger.

I had hope that I was going to live instead of die like my nine friends and first two partners.

Fifteen years ago, I became undetectable. Words can’t describe the joy, lightness and relief that came with that news. I have a quality of life again, which is a big deal for people with HIV because there is no cure.

I had hope for the first time ever; that I was going to live instead of die like my nine friends and my first two partners.

I continued to feel better. I exercised and lost 60 pounds. I volunteered doing activities I loved. I worked in the food and beverage industry for a total of 35 years, and I opened new restaurants. I was featured in documentaries. I felt like I had a whole new life.

I worked with the campaign Smash Stigma at their pop-up restaurant to change people’s attitude against people with HIV preparing their food. I wore an apron that said, “HIV is my disease, is ignorance yours?” We proved that people with HIV can cook and serve food just like anyone else.

At 60, I was diagnosed with stage 4 squamous cell carcinoma (throat cancer) and given eight months to live. My tumour was 10 centimetres long at the back of my throat. I went through two surgeries and multiple rounds of radiation. The radiation was brutal; it breaks you before it heals you. My history beating AIDS and my care team gave me the persistent will to fight to beat cancer, too. I’m proud to say that I’m now cancer free.

Thankfully, my HIV treatment cocktail (that costs $2,000+ a month) is covered by the government. However, living on welfare makes it extremely difficult to pay for all the other items I need to live with my current health condition, like my adult diapers that cost $1,500 a month.

Thankfully, five years ago I enrolled in a day program at Casey House, a hospital and centre for people with HIV/AIDS. They provide holistic care that I had to pay for out of my shallow pockets until they took me under their wing. They feed me five meals a week, provide physiotherapy and massage therapy, teach adult education classes and take me on day trips.

I believe I am not my illness, and furthermore, that my illness is private. I should not be labelled; not for having HIV or for being gay because I am a loving, caring and giving person who was dealt a difficult set of cards.

I did not choose to be gay. I did not choose to have HIV. I did not choose to have cancer. And did not choose to be a hopeless romantic.