Editing life's story into a happy ending

By Michael Slezak

Hal Rubenstein was officially diagnosed as HIV-positive some nine years ago. That was long before the age of protease inhibitors and, as he says, long before an age of hope.

"The doctor who told me that I was HIV-positive said, 'Here's some [AZT] pills. You've probably got about two years. Good luck,'" recalls Rubenstein, fashion editor at large for InStyle magazine and a sometimes fashion critic for E! cable TV network. "He said regardless of what I elected to dostress reduction, exercise, change in diet or attitude, alternative medicine or any other kind of therapyit wouldn't do a damn bit of good."

Times and attitudes have indeed changed since the late 1980s, as have the medications available to treat HIV and AIDS. But one thing that has remained constantand perhaps the one thing that has kept Rubenstein healthyis his belief that HIV will not kill him.

"I know how arrogant this sounds," he says, sitting at the desk of his Manhattan office, "but I have never felt I was going to die from this. I'm not saying I never thought I was going to get sick. Or that I never woke up in the middle of the night screaming or that I didn't curse God and hate everything and everyone in the universe from time to time. But if you actually ask me, do I really think I'm going to die from this thing, the answer is 'No.' And it always has been 'No.' I can't think that way."

The power of Rubenstein's positive thinking seems to have paid off. He has suffered side effects from his medications, and even battled homeopathic poisoning, but has never experienced HIV-related illness.

"The biggest mistake people make is fighting HIV. It's like fighting having blue eyes. It's stupid," Rubenstein explains with a sly smile. "How do you make HIV a part of your life and not treat it like an infirmity? I feel it's the same as making height a part of my life because I'm 6'4."

Indeed, the very tall, tanned Rubenstein, with his striking good looks and quick wit, seems totally at ease discussing his HIV status. He chats about it with little prompting, offering vivid, sometimes very funny details.

"I'm not being Pollyana, but being HIV has not exactly been completely horrific. Given the choice, would I do it again? No. Would I be very happy not to have it? Sure I would. Has it been a completely negative experience? No way in hell," he says, raising his voice. "I think that the actuality of living with and understanding HIV has helped me come to an understanding and a clarity in terms of how I live."

Rubenstein argues that HIV, as with any chronic illness, gives you "the opportunity to learn how to edit your life a little more quickly. And I don't say this because I'm from a journalism background. You get rid of the junk and make sure the story is clean, clear, in focus and going your way."

And what should remain in the story? "Go find a job you like. Find someone who loves you. Go buy a dog," he says. "These things matter. Get rid of the people in your life who are a raging pain in the ass. That alone will make your T-cells jump."

Rubenstein lives that philosophy to the fullest. It's what prompted him to leave his job at The New York Times in 1994 and come to InStyle. "The Times is the most important newspaper in the world, and the biggest stress factor of all. It was making me sick," he says of the paper's pressure cooker attitude and the "elitist homophobia" he experienced among co-workers.

In fact, Rubenstein says his negative experience telling his HIV status to a few of his Times co-workers prompted him to not go public with the newsuntil recentlywhen he revealed he was HIV-positive last year in a profile he wrote about Linda Ellerbee in the premiere issue of Mamm magazine.

"I regret not having done it sooner," he says, adding that he wanted to make sure that the world does not forget the voices of people who were diagnosed before protease inhibitors, including the hundreds of friends he has lost. "These men and women had to face a combination of hopelessness in their head and stigmata on their head. And it was very hard and very ugly and people were not very nice," says Rubenstein.

Rubenstein began to take protease inhibitors in the fall of 1996. He began by taking Norvir, but now takes Viracept with AZT and 3TC, plus Zovirax and a regular regimen of vitamins and supplements, St. John's wort, melatonin and DHEA. He also takes testosterone every two weeks.

"My normal viral load without any protease inhibitors was 2000. Now, my viral load is undetectable. And it's always more fun to be undetectable," says Rubenstein. Still, he's not convinced the new drug cocktail has affected day-to-day life for the better. "Do I think not taking them would kill me? No, not now. Do I think they're helping me? I'm not arrogant enough to say no, or certain enough to say yes," he muses. "My feeling is, 'What am I losing by taking them?'" Adjusting to protease inhibitors, however, was very difficult, says Rubenstein. "The diarrheathat was a party," he says dryly. "I certainly didn't wear white very often."

And that was only the beginning. "It was fascinating in a sense that I didn't know my body could do these things," Rubenstein recalls. "I'd be standing someplace, and all of the sudden my left eyebrow would freeze, then my right forearm would spasm, then my left hip would be burning up, then I'd have a stinging pain in my right knee. It went up and down my body. It was as if the New York Philharmonic was doing a concert in the park and having a fireworks display, but it was all happening inside of my body."

But the worst result of tasking protease inhibitors, Rubenstein argues, was that his mouth "tasted like spoons" whenever he was hungry. "It was horrible. That actually made me physically nauseous," he remembers.

Now, the worst part of his medication regimen is that his Viracept is "one nasty pill to swallow. It's very granular and I choke on it 50% of the time." That, plus he must swallow around 30 pills a day. "Pills are annoying. They are," he insists.

Further, he adds, they are not his savior.

"Pills alone won't make you survive anything. They don't, they never can, they never will. These pills are an assist, a boost. They're not the reason and they're not the answer," contends Rubenstein. "If you take these pills and put yourself in a life full of stress, in a job you don't like, surrounded by people who are not supportive or don't understand you, or a lover who's in denial, I don't think pills will make a hell of a lot of difference."

And it's important, too, to realize that "nothing you do happens in a vacuumnot even acquiring HIV," he says.

What does Rubenstein mean by that? He pauses for a moment, then responds. "There was a point in time when I thought the illness was mine. It was like I was saying 'It's just mine. You can't have it. You can't share it. You're not at risk. You can't die.' It took some other people, especially my lover, to make me realize that while the disease is mine in a physiological sense, it wasn't just mine in a broader sense."