An AIDS survivor reflects on the life he has been able to have

From The New York Times:

By the fall of 1995, Sean Strub (pictured) was near death from AIDS.

He’d already lived longer than he was supposed to. He was sure he’d experienced the first symptoms while a student at Columbia in 1979, though by the time he was tested and his disease formally diagnosed it was 1985. “The doctor held my hand, looked into my eyes and said, ‘Sean, these days you can have a good two years.’ He was trying to cheer me up.” That doctor, Nathaniel Pier, died of AIDS, as did another who treated Mr. Strub, Dr. James Nall.

Five of the six men he had roomed with in New York City during the 1980s, including Andre Ledoux, Michael Misove, Bob Barrios and Paul Friedman, died of AIDS.

Early on, Mr. Strub helped support himself by building mass mailing lists of people involved in gay causes. (“If a gay travel agency went out of business, I’d buy that list.”) In those pre-Internet days, his lists made him invaluable for fund-raising and political activism as he joined groups like the Gay Men’s Health Crisis and Act Up. He lived, worked and protested in the heart of the epidemic, was arrested for civil disobedience several times and knew hundreds of gay men who died of AIDS. He once had to choose from three memorial services held on the same day. When visiting a friend at St. Vincent’s Hospital in Greenwich Village, he would walk the halls, read the names on the doors and discover others he knew who were dying.

In 1994, he started POZ, a magazine for the H.I.V.-positive. The idea was to give people hard facts, but realistic hope, although by 1995, his appeared to be running out. He normally was thin — 6-foot-1, 156 pounds — but by then weighed 124. The Kaposi’s sarcoma lesions, which started on his body in 1994, spread to his neck, face and, by 1995, his lungs, making him a “90-9” club member: 90 percent died within 9 months. That year, 51,373 Americans died of AIDS, the epidemic’s high point, according to the federal Centers for Disease Control and Prevention.

And then in January 1996, protease inhibitors that stopped H.I.V. from replicating were approved by the Food and Drug Administration; Mr. Strub started on a daily dose of 16 pills.

In one week, he felt better. In a month, others noticed. “For the first time I thought I’d be alive in a year,” he said. “My planning window changed.” He bought a new suit, visited the dentist again.

He worried that the drugs, like others he had taken, would stop working. But as lesions disappeared, the weight returned, his energy remained good and time passed, “I crossed the line.” He grew accustomed to good health, though he’d changed. “I was more reflective, grateful, guilty, thinking about the ones who were so close, who’d made it to ’94 and ’95 and just missed being saved.”

Sometimes it felt as if he was the last one out before the building collapsed.

He moved 75 miles from Manhattan to Milford, Pa., a frayed, somewhat depressed area, where he bought a run-down hunting cabin on 600 acres. He fished and indulged his interest in historic preservation. “I started projects that took two to three years. I was willing myself to expand my planning window.”

In 2001, he began publishing Milford Magazine, extolling the town’s virtues, and in 2004 he sold POZ.

He fixed up and sold real estate, organized local festivals, opened a restaurant, a bed and breakfast, a newsstand and a mailbox store. In 2001, he and a business partner bought a historic hotel that had been closed 25 years, and in 2006 reopened it as the Hotel Fauchere, renovating it with enough care to become part of the Relais & Châteaux hotel group. “I got hyper-involved in Milford,” Mr. Strub said. “It was like I was putting myself into a Norman Rockwell painting.”

And yet, he couldn’t quite forget.

So many contemporaries had died that, at 51, he now has friends who are mostly older or younger. Even sophisticated young men he would meet, like Matthew Vitemb, 21, a recent graduate of Bard College (who prefers “queer” to “gay,” which he considers an outdated boomer term), had never known an H.I.V.-positive person until he met Mr. Strub.

Mr. Strub was struck that recently, when Representative Tammy Baldwin, the openly lesbian congresswoman from Wisconsin whom he calls a hero, released a video describing the impact of health care reform proposals on gay men and women, she didn’t mention AIDS.

While AIDS deaths in the United States are the lowest in 20 years — 14,497 in 2007, according to federal figures — and the most affected race has changed from white in 1995 to black today, the biggest single group dying is still gay men. “People don’t understand how easily it can happen again,” Mr. Strub said.

Somebody has to be the memory, he said.

In April, for the first time in a decade, he moved back to Manhattan full time, and now spends most of his days working for a small nonprofit group on AIDS issues. “I felt like I’ve done what I can do in Milford,” he said.

So many longtime advocates he’d known from the ’80s and ’90s now suffer from substance abuse and mental health issues like depression, that he has come to think of these problems as a form of post-traumatic stress caused from being so immersed in death.

The book that most brings back the feeling of that time to him is not about AIDS, but about Vietnam: Michael Herr’s “Dispatches.”

“You lived never knowing who would die next, where the next bomb would go off,” Mr. Strub said.

It’s probably a sign of his own trauma that as bad as things were then, “I miss the camaraderie the epidemic created,” he said. “An incredible clarity of purpose. An incredible sense of community.” He finds making new friends easier if it’s someone H.I.V.-positive.

He helped out with the National Equality March that is taking place in Washington this weekend. He assisted a younger black woman, Christine Campbell of Housing Works, a Washington-based AIDS services provider, with organizing the AIDS vigil for Saturday night. During a conference call last week, he was mostly quiet as she described the preparations, speaking up only to remind everyone of the plan to hand out palm cards for collecting e-mail addresses so they could build a contact list for future political action. “I feel like the grandpa,” he said after the call. “This is being created by a new generation of activists, so bright and excited.”

Mr. Vitemb, the recent Bard graduate, said his generation has internalized the lessons of gay boomers. “No one I know has multiple, multiple partners now,” he said. “Most young people now seem to want to be married.” But his generation doesn’t know how these changes came about, he said. “Sean provides a firsthand connection to that.”

Mr. Strub’s first gay rights march on Washington was in 1979. He was 21 and so thrilled that afterward he wrote a six-page letter to his parents in Iowa explaining how he was dedicating his life to the movement.

Now, he is marching in memory of lost lovers, lost roommates, lost doctors and all those others who didn’t make it to 1996 and the new meds. But he is also marching with his cousin, James Neiley of Vermont. James is 17, openly gay, and last spring spoke at a public hearing in Montpelier, presenting state senators a manila envelope filled with 100 letters he’d collected from teachers and classmates at Champlain Valley Union High School supporting gay marriage.