Positively Aware at 35 : Coming home

We say today that HIV is no longer a death sentence. Early 1996, though, was a different time. There were no effective HIV drugs yet available. Many people diagnosed with HIV, often at a late stage, developed AIDS. Fear and misinformation exacerbated stigma. John Giles had developed Kaposi sarcoma, the purplish lesions that had come to be associated with AIDS. He wanted to confront fear and stigma by literally becoming “the face of AIDS,” so he agreed to appear on the cover of the March+April 1996 issue for a story about hospice living. Following are excerpts from associate editor Enid Vázquez’s article.

—Rick Guasco

Hospice living—The options and possibilities may surprise you

by Enid Vázquez

When his Kaposi’s sarcoma got so bad that it required amputation of his right leg, John Giles’s doctor told him he was being sent home for hospice care. It made his heart skip a beat—hospice meant dying.

Always an upbeat, outgoing person who had achieved his life’s dream of making a living through music by singing with the chorus of a major opera house, Giles did not want to give in to his illness.

“I said, ‘Okay, God, am I going home to live or to die?’” Giles remembered. Then he heard a tape of his music being performed. For the first time, be realized that he truly was a composer. For him, it was a “miracle,” and a clear sign: he had come home to live.

John Giles left his singing career, but not his music career. From the time his partner leaves for work at 8:00 in the morning until he returns at 6:00 in the evening, nurse’s aide Frankie Brown is there to help with breakfast, laundry, cleaning, errands and moving around the apartment. Giles works away, organizing his books and memorabilia and, most of all, composing music—not to mention giving voice lessons and beginning piano lessons. He cannot collect Social Security payments because his income is too high. “Hospice has been wonderful,” said Giles. Although both legs have now been amputated, his career continues with the nonprofit Sunshine Productions that he and his partner started. Twice a week he is at his Unity Church conducting the choir. Hospice is just a necessary adjunct to help him organize his life and work. 

Giles did not decide on hospice. Chicago’s Horizon Hospice is affiliated with St. Joseph Hospital, where he is treated, and his doctor made the decision for him. “He is so sweet, and he kept telling me, ‘It doesn’t mean you’re dying. You are going to need the help. Now I know he’s right,” said Giles.

“Horizon Hospice has carried people for three or four years, I’m going to be one of them. Too many people, in my opinion, go to hospice, and they just basically retreat. They sit on the sofa with a remote control and just click their life away. That’s not the path I’ve chosen,” said Giles.

“I’m on a plateau with a very serious illness. It’s God’s call, and until then, I’m busting butt to stay healthy,” said Giles.

About three months after the issue was published, Giles passed. Later that year, the first of a new class of effective HIV drugs, protease inhibitors, became available. For the first time since the start of the AIDS epidemic the death toll dropped, from 48,371 the year before to 34,947 in 1996, according to the Centers for Disease Control and Prevention (CDC). In 2022, the most recent year for which statistics are available according to hiv.gov, there were 19,310 deaths among people with HIV in the U.S.; these may have been attributed to any cause. –RG