By Michele Mandel

Toronto Sun 27 May 2001

Man's life put on hold for 16 years before learning he does not have HIV

He has lived his life with a death sentence stapled to its corner, measuring each activity, each plan with the time limit that has followed his days for more than 10 years.

While all our lives are finite, Peter Castle had a far clearer indicator that his time was relatively short for this world. The 36-year-old former hairdresser was diagnosed with HIV some 16 years ago -- and since then he has watched far too many of his friends die painfully of AIDS. He knew a similar fate was his.

At least he did until two months ago.

After a decade of being treated for HIV, after years of believing that he would die an ugly death, after two serious suicide attempts and periods of devastating depression, he has been told that his original diagnosis appears to have been wrong. Incredibly, Castle is not HIV-positive at all.


"At first it was disbelief," says Castle, a soft-spoken man with warm eyes and a Cary Grant cleft in his chin. "There was a lot of foggy thinking. I didn't know what I was going to do. It was so hard to believe after so many years."

He shakes his head at the way his entire future has changed in a few short months. "There was lots of anger later on. I can't believe this -- what a waste of time, what a waste of all these years."

As a sexually active gay teen, Castle knew he was at risk and so went to be tested for HIV at an anonymous testing clinic. Two weeks later he was told the result was positive. He was not surprised.

He responded with a period of wanton rebellion, he admits with a trace of embarrassment. There was much "screwing around" without protection, much drinking and much failing to show up at the hair salon where he worked.

"I hit bottom and ended up in a psych ward," he recalls, sitting in the pretty den of his rented house in the upper Beach. He could no longer stand behind clients with a smile on his face, pretending that he was fine when he was not. He could no longer watch the owner scramble over with gloves when he accidentally cut himself and bled on the salon floor. With doctors appointments and fatigue from his medications, he finally had to leave work and go on Canada Pension Plan Disability and the Ontario Disability Support Program. His depression only grew. Watching his worried parents put their retirement plans on hold to be near him became too painful to bear. Volunteering at Casey House, the AIDS hospice, showed him all too clearly what lay ahead for him.

He thought killing himself was the only way out.

"I feel really bad for what I've put my family through. My mother has sat with me a couple of times in intensive care after suicide attempts. I was at the point that I didn't want to live like this -- watching my friends do stuff like buy houses, be in long-term relationships, be able to travel. I think a lot of it was just loneliness. I couldn't just go out and be fun to be with. I spent a lot of time alone."

He first tried to kill himself six years ago by slashing his wrists. His second attempt, two years later, was more earnest when he took his diabetic father's insulin.

It is frightening to think how close he came to being successful -- especially when it appears his depression was from facing a fatal condition he never really had.

"It is the first case I have ever heard of," says a mystified Robert Trow of the Hassle Free Clinic. "Testing (by the ministry of health) is very accurate -- it's not just a screening test, it's a screening test and a confirmatory test which is specific for HIV. The testing procedure is considered quite good."

Castle believes his is a case of mixed-up blood samples. He doesn't know if his family doctor ever retested him or simply treated him based on the diagnosis he provided when he went to him in 1991. His doctor put him on an anti-viral drug cocktail, at a monthly cost of $890, and tested his blood twice a month for his viral load, the measure of HIV in his system. His viral load counts had always come back "undetectable" but Castle never thought to question why.


When one viral load test recently came back higher, his doctor sent him to the immunodeficiency clinic at Toronto Hospital. Puzzled by his case, the specialist decided to retest him. In March, both tests came back as HIV negative.

"He brought me in and said, 'I have this news for you,'" Castle recalls. "He said, `This has been a mistake. I would do something about this -- this isn't right. You don't have and you never have had HIV.'"

Imagine all the assumptions you've made about your past and your future are suddenly so much pixie dust. It was not immediate elation, but acute numbness. His specialist sent him immediately to a psychologist at the hospital who tried to prepare him for the roller coaster of emotions that he might feel. And he has felt them all -- from relief to anger to confusion. How could this have happened? And how does he now go on with the rest of his life?

Castle's first stop for help was the AIDS Committee of Toronto, which directed him to the HIV and AIDS Legal Clinic (Ontario). They recommended a list of lawyers and are paying the costs to obtain all his medical documents. Lawyer Doug Elliot says he wants to carefully review those records before recommending any course of legal action. "It's the first case in the world if it's happened," he says cautiously.

Castle has written CPP and informed them of his HIV-free status. They don't know what to do with him -- there's no category for job retraining on the basis of an erroneous HIV test.

Telling his family was a joy. Telling his HIV positive friends was more difficult. With some trepidation, he told his fellow members of an HIV-positive and depression group and was relieved when they offered their full support. Still, in a strange way, his new lease on life has left him more lonely than ever. The world he has had to build for half of his existence was based on his HIV status. Now, he says, "I feel like an outsider."

So much put on hold

There has been so much that has been put on hold, so much that he now wants to do. He wants to retrain in the medical technician field, he wants to travel, he wants to be able to work and afford a car again.

No one can tell him yet what damage 10 years of anti-viral medications may have done to his body. No one can give him back all those lost years.

"It's made a pretty big mess out of my life at this point. It's like having to start all over again."

Except this time, with hope.