A new lease for the AIDS generation

Fifteen men, one life-changing disease, 15 creative ways of coping and even thriving. That's the subject of the new book "The AIDS Generation: Stories of Survival and Resilience" (Oxford University Press), by psychologist Perry N. Halkitis, PhD, a New York University applied psychology and public health professor, longtime AIDS, mental health and substance abuse researcher, and editor-in-chief of Behavioral Medicine.

In the book, Halkitis, who is 50 and who contracted HIV during the epidemic's height in the 1980s, chronicles the lives and experiences of 15 middle-aged peers whose common thread is surviving the illness.

The diverse group of men includes African-Americans, Hispanics and whites in disparate roles, including an AIDS service organization staff worker, a motivational speaker, a schoolteacher and men living on disability, among others. Each lived his own unique and sometimes painful journey, but they all learned remarkably similar lessons, Halkitis says. Those include:

• Confront and accept your disease, but do not define yourself solely by it.
• Attend to all aspects of your well-being.
• Keep your life moving forward, and maintain a conscious desire to live, thrive and triumph.
• Realize that not everyone takes the same path to dealing with the disease.
• Recognize that living with HIV creates a condition where there are going to be health challenges, but don't direct your life by fearing these conditions. 

Here, the Monitor talks with Halkitis about the book and its rather remarkable subjects.

What prompted you to write "The AIDS Generation"?

While a growing body of research has focused on the problems and deficits associated with HIV in the gay and aging populations, there are few works that focus on resilience, successes and thriving.

I also wanted to document the story of the men of this generation in a way that would be accessible not only to future generations of people who might have to deal with this disease, but to the general public. I teach an HIV class every year, and 21-year-olds have no idea what it was like in the 1980s when people first faced the illness.

On a personal level, writing the book raised a lot of issues for me — issues that I had completely compartmentalized. But it was also very cathartic. It allowed me to get rid of the ghosts of the past. It also made me realize I wasn't on this journey alone.

How did that generation — your generation — handle the AIDS crisis?

As a psychologist, I tend to think of it in Eriksonian terms. All of these men were in their late teens, 20s and early 30s when they contracted HIV — a time when in developmental terms they should have been reconciling the issues of finding their place in the world and finding someone to love. That process was completely derailed for them.

These men are now in their late 40s and early 50s, the stage where generativity and creating one's legacy are the important life tasks. But to accomplish that, these men first have to go back and reconcile the earlier struggles they didn't reconcile. Finding someone to love and finding their place in the world weren't really foremost in their minds when they were 25 and just trying to live. For all of these men, there was also the challenge of being gay, coming out and coming of age in the 1970s and early '80s, which was only a decade after Stonewall [the 1969 violent protests by the gay community against a police raid of a gay bar in Greenwich Village]. For many, negotiating their sexual orientation in a heterosexist and homophobic society provided them with the fortitude to deal with this epidemic.

What are some key ways these men stared down a frightening medical mystery and the social stigma that went along with it?

They spoke very clearly about continuing to move forward, about outrunning the virus, about thinking ahead, about being hopeful. Those characteristics came through very clearly.

They also spoke about attending to their whole selves. Certainly they were trying everything possible to attend to their physical health. But at the same time, they were making sure they were attending to their emotional and social well-being in ways like seeking counseling to attend to their psychological well-being, immersing themselves in education about the disease so they could fight it with knowledge, and forming AIDS service organizations from scratch to help and support each other. They defined themselves as more than vessels of this pathogen, and their actions speak to that idea.

A big influence for some of the men was the AIDS advocacy organization ACT UP (AIDS Coalition to Unleash Power), which you talk about in the book. Why?

To the naive observer, ACT UP is simply an organization that demanded the development of appropriate treatments from our government and pharmaceutical companies. This indeed is true, and ACT UP was very successful in changing the manner in which medications of all sorts are now developed. But I think the organization served another very important role — it enhanced the social cohesion and social capital of those who were involved. People came together and built this community. And we know from the literature that higher levels of social capital are related to better health outcomes.

This speaks to me of the struggles these men face as they age and in light of effective HIV treatments — where is that community? Of course, much of their community was completely devastated at the time. Now, 30 years later, the attention to the epidemic is not the same — services aren't the same, and certainly nobody is putting together groups of older gay men to talk about their lives.

Are there any hopeful trends emerging for this group?

I have a story for you. On May 9, a set of us in New York — academics, medical doctors, activists — came together and organized a community forum called "Is This My Beautiful Life?" We wanted people of our generation — men, women, HIV-positive, HIV-negative, across every race, ethnicity, borough, whatever — to come and just be together.

I moderated this event. First there was a panel that lasted about 40 minutes. Then for the next two hours, lines and lines of people came up to an open mic to tell their stories. For so many of them, this was their first opportunity to come together in a public gathering and talk about their experiences of survival and loss (see a YouTube clip of the event's highlights).

That event has created some media momentum. But do I think there will be an outpouring of money from the government, which has no money to provide to agencies that provide services? Not really. But like in the early days of the epidemic when people banded together and created their own agencies and groups, I think that's beginning to happen again. At least I hope it is.

Are there similarities in people's experiences living with HIV and coping with other chronic illnesses like cancer?

Early in the book, I talk about the fact that the lessons gleaned from these men can inform not only future generations who must live with this disease, but anyone who's combating a life-threatening illness.

Not to sound Dr. Phil-ish, but in chapter 6, I list 10 things that we can learn from their experiences, and it's very similar to what successful cancer patients do. They created social networks, they got their support, they took care of their emotional lives, they weren't afraid to take risks to improve their health, they talked about their disease — they didn't bottle it up. At the same time, they didn't define themselves solely by their disease.

In what other ways has your background as a psychologist and public health expert shaped your understanding of the AIDS crisis and the people who lived through it?

So much of my career is informed by [George L.] Engel's 1977 Science article about the importance of a biopsychosocial model. That has completely influenced the way I approached all my work, which is to say that people's strategies for survival, success and resilience deal with all domains of human existence, not just the medical or physical domain.

I refuse to believe that this disease is simply a biomedical condition. It is a biopsychosocial condition. Anyone who chooses to believe that a bunch of medications alone is going to solve this problem is out of their mind.

Did you have any surprising insights or outcomes from doing this book?

As a writer, and as someone who lived through what I was writing about, I became part of the book, in a sense. Now I have this camaraderie, not only with the men I interviewed, but with a much larger group of men I had the privilege of meeting and talking to over the last few months. We've created a new Band of Brothers.

As I mentioned, when you think about 50-year-olds, you think about their legacy and their generativity. These men are still forming their legacies. But it's pretty clear to me that a big part of that legacy is how they survived this despicable disease with dignity and grace.

Tori DeAngelis is a writer in Syracuse, N.Y.