THE BLOG

Outliving Ourselves: Long-Term Survivors of AIDS Come Together

02/11/2015 12:22 pm ET | Updated Feb 02, 2016

23 men ranging in age from 44 to 77 sit in a circle. It's a big carpeted space in Lower Manhattan. They are self-described as Long Term Survivors (LTS) of HIV/AIDS.

I'm facilitating the group. I'm also part of their cohort.

We have come together to look at the next chapter in our surprisingly long lives. Most of us have looked at death squarely and directly. Some of us are damaged; some of us are not.

For many older men with HIV, being alive is, perhaps, the biggest surprise, and also the biggest challenge. Dying young let's us off the hook. Our brothers and sisters who perished before the AIDS paradigm shift of 1995/96, did not have to deal with aging: not aging bodies, not dying parents, not financial insecurity caused by interrupted careers, weakened bodies and PTSD -- not from isolation and stigmatization within their own community.

For some of us, AIDS was a call to action. We created support systems, or stormed the FDA with Act Up. We stayed fully in the mainstream of our lives. We continued to work, to have relationships, to build a future around a "new normal." Some of us lost our way. Some of us find ourselves living diminished lives on disability payouts that provide subsistence but very few frills. Some have been unable to pick up careers that were interrupted. Many face, not only HIV/AIDS stigmatization and prejudice, but ageism in the workplace and in the social world.

This is the second iteration of a program that Friends In Deed, with funding from the Elton John AIDS Foundation, created last year to offer emotional support and community to this cohort of often traumatized men. We will add programs that include women in the future.

Friends In Deed was founded in 1991 by Cynthia O'Neal and Mike Nichols to provide a space for the men and women living with, and dying from, AIDS, as well as their caregivers, loved ones and friends. We have always supported possibility, living with quality in the present, and accepting death and grieving when it does occur.

I was diagnosed HIV-positive in 1984 as part of a study, when the test was not yet available to the general public. My immune system crashed in 1994, and I was critically ill with pnuemocistis pneumonia. I recovered from that bout and in 1995; I won a lottery for early access to the first workable drug "cocktail." I'm unusual. I survived without any significant damage to my body.

I had gone back to school to get a master's in counseling, leaving behind my career in the arts. I became a group facilitator and crisis counselor at Friends In Deed. I have led over a hundred AIDS MASTERY Workshops with its creator, Sally Fisher. I have a private practice and I have written columns on the subject of living with illness and vital aging, as well as my book THE NEW 60: Outliving Yourself And Re-Inventing A Future. AIDS changed the direction of my life, but it didn't derail it. Some of my brothers sitting in the circle have not been so fortunate.

That there is a need for groups and programs like this is undeniable. We have seen success: Many of our alumni have felt regeneration as they joined together for workshops, seminars and monthly dinners. Each participant chooses achievable goals that are often about socializing, dating, recreating, sometimes about work and creativity. They support each other as they are supported by the staff at Friends In Deed, particularly Jon Jay Read and myself, members of their subgroup, and Kate Lamb, the program coordinator.

We are interviewing participants for our third section which will commence in mid-April. We are excited to offer possibility and community to men ( and eventually women) who often have a sense of having been left behind and left out. You can move forward into a new chapter with support and in community.