[dropcap]T[/dropcap]erry was twenty-six when he was diagnosed with HIV in December 1994. He had been feeling under the weather with flu-like symptoms on and off for about five months when he went to see his doctor at Boston’s Fenway Community Healthcare Center. When his doctor gave him the HIV diagnosis, Terry didn’t believe it. He was shocked. He had been testing regularly ever since he had come out five years earlier and all those tests had been negative. He couldn’t be HIV-positive. He insisted on a second test.
The second test confirmed Terry’s status: He was HIV-positive.
He received the test results just two days before his parents were due to arrive from upstate New York to celebrate New Year’s Eve with him. He stumbled through the weekend in a state of shock and disbelief.
Shock and disbelief soon gave way to depression, as he became more isolated, and grew lonelier, as a result of the stigma he faced. “I had few friends,” he told me, “and they were all older guys. When I told them about my diagnosis, I immediately felt like an outcast. They began treating me as if, oh well, you won’t be here much longer.” Six months after his diagnosis, convinced that he had only a year or less to live, Terry told his parents about his diagnosis. “They ended up being okay with the information,” he told me. “Accepting, yes. But not wanting to talk about it. Still to this day not wanting to talk about it.”
For many years after moving to San Francisco in 1996, Terry’s life repeated familiar, depressing patterns. “I tried to meet guys online for a long time. And every time I told one of them that I’m positive, either on the phone or in person, they disappeared, and I never heard from them again.” As date after date failed, Terry’s isolation and loneliness seemed endless.
[quote_box_center]”I had an AMAZING life changing experience at the Honoring Our Experience retreat this past weekend… I was able to drop walls I had put since I first tested HIV+ in March, 1980, 36 years ago….”— A.C. Jackson[/quote_box_center]
In October 2015, Steve, a friend whom Terry had met at a California Men’s Gathering gave him a postcard advertising, on one side, a dance celebrating long-term survivors of HIV/AIDS and, on the other side, a December retreat for long-term survivors at Saratoga Springs, both sponsored by a group called Honoring Our Experience.
Gregg Cassin, the founder and guiding light at Honoring Our Experience and chief facilitator at the HOE retreats, had been facilitating large groups for thirty years, beginning in 1989 with a group called The Healing Circle. Honoring Our Experience was born out of a sense that the community was ready to reflect on and talk about the profound and unique experience of having lived through such a painful and challenging time. “After seeing the movie We Were Here, I felt like it was time to create a space for the community to come together and to do exactly what the title says—honor our experience. I created several large gatherings at MCC in 2013 and then started working with Saratoga Springs on the HOE retreats,” Gregg told me.
[quote_box_center]“It was so empowering to be with a bunch of men who shared the same experiences and fears. The heart circles… were an amazing experience—listening to everyone and understanding that all of us, even those of us who are negative, shared so many feelings, blew me away…. I couldn’t help but start to sob.”—Anon.[/quote_box_center]
Honoring Our Experience has built on the realization that the AIDS epidemic had a deeply profound effect on an entire generation. During the height of the epidemic in the 1980s and ’90s, in the face of being ignored (at best) or ridiculed (at worst) by our government, shunned by medical caregivers, abandoned some times by friends and family, we discovered that our one best hope for the dignity and care we deserved was us—ourselves and the community we could build. Together we suffered incalculable loss and unfathomable grief: we lost friends, lovers, family, partners in life, co-workers, and for some of us, entire extended families to the epidemic. The plague decimated an entire generation.
As Gregg often points out, for many of us, both as individuals and as a community, along with that grief and turmoil came a renewed sense of purpose, of connection birthed by necessity. “As an embattled community came together, we were in awe of our courage, compassion and strength,” he has written. “This community had been discarded, shamed, maligned, hated, outcast and ignored. But we came together in the most beautiful and powerful way. We were selfless angels when needed, brilliant strategists when needed, and ferocious attack dogs when needed. We needed every talent to respond to this war.” Honoring Our Experience harnesses that courage and compassion and strength to help long-term survivors, both HIV-positive and -negative, deal with the unique challenges of aging with HIV individually and as a community.
[quote_box_center]“Thank you for an amazing restorative and healing weekend…. My life is richer and my heart is fuller because of it. Love does heal, and you create the space for it to happen.” —E. Connelly[/quote_box_center]
“Long-term survivors are now dealing with issues of isolation, depression, economic turmoil, deep grief and a loss of hope. But profound healing is available to us through recreating community. That is what makes the Saratoga Springs retreats so valuable, so joyful. Through sharing with each other, we not only learn about the well-documented challenges facing long-term survivors, we learn and practice the tools for our own renewal,” Gregg said. The retreats are both informational and experiential, providing activities (heart-circles, small group discussions, music, movement, writing exercises) carefully designed to foster a sense of community, of belonging to a strong, loving community. “We learned from our response to the epidemic that joining together in community can be profoundly healing. But we gather for other reasons as well, some shared, some personal. We honor one another and what we experienced as well as remember those we lost. We join because being with one another can help make sense of our experience, both the stories of suffering but also those of the wisdom we gained.”
As the attendees at the retreats can attest, “Love Heals” is so much more than a slogan for the group, it is the spiritual basis for everything they do.
[quote_box_center]“I felt so welcome, so safe. The energy, the love and the empathy present at the retreat were ethereally palpable.”—S. Garrett[/quote_box_center]
Although we tend to think of most long-term survivors as gay men of a certain age, the Honoring Our Experience retreats extend a special invitation to women, people of color, trans-people, young adults, elders, and HIV-negative people, gay and straight, who have lived through and been profoundly impacted by the AIDS crisis. The rich diversity within the groups who attend the retreats reflects the profound role the epidemic has played in shaping all of our lives.
Despite his research into Honoring Our Experience, Terry remained skeptical.
“Steve had been on the retreat before and very strongly urged me to attend the one in December,” Terry told me, “but I wasn’t sold on it. I just wasn’t sure that it was right for me.” Exacerbating his longtime loneliness and isolation, Terry had just ended a seven-year relationship with another positive man. Still, he was intrigued by the promise of an opportunity to rejoin and re-involve himself with the HIV community.
The postcard provided a phone number to call for information, so he called Gregg Cassin to talk. “Gregg was amazing on the phone! He talked with me for over half an hour. He told me everything I should expect at the retreat.” Terry still waivered, he said, until Gregg said, “Look, these retreats are designed for people exactly like you.” “That,” Terry said, “made up my mind.”
When I asked Terry if the retreat lived up to his expectations, his eyes lit up and his smile spread. “Oh! It was so much better than I expected!” He got his first sense of genuine community at the retreat as soon as he arrived. He had offered his services as a driver in a carpool from San Francisco to Saratoga Springs, and because his car had room, he was asked to share the ride with an older transgender woman who needed to bring both a wheelchair and a walker to the retreat. As soon as they arrived at Saratoga Springs, Terry noted, many people quickly came to help him unload the wheelchair and walker and then graciously led the older woman through the registration process. “That put me at ease immediately,” he told me.
[quote_box_center]“I went into the weekend anxious about being among a group of strangers; I walked away feeling I’d gained a family…. I highly recommend this experience for all people impacted by the epidemic!”—B. Vicini[/quote_box_center]
Terry’s favorite among the many activities at the retreat was gathering in small groups to discuss prompts like, “Describe how the virus has made you feel through time.” He enjoyed the intimacy generated in the small groups and the openness everyone brought to very emotional topics. He was also deeply moved when, at the end of the retreat, everyone was given a greeting card, with instructions to write a greeting to his or her younger self. Terry said he wrote to his younger self, telling himself how wonderful the retreat would be, and assuring himself that he would find and become part of a loving community in the future in San Francisco and Saratoga Springs.
“What I remember most,” Terry told me, “was the complete absence of judgment. No one was judging anyone or rejecting anyone. It really made me feel like getting back out and getting involved with this community.”
Our interview concluded when Terry had to leave for a meeting at Honoring Our Experience. He is an enthusiastic member of the committee planning the next HOE retreat.
For more information about Honoring Our Experience, the quarterly Saratoga Springs retreats, and other HOE activities—or if you’re interested in a HOE retreat in your area—please contact Gregg Cassin at [email protected] or call him at (415) 674-4706. You may also find more information at www.facebook.com/groups/HONORINGOUREXPERIENCE.
Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. His published writing has ranged from gay “smut” (his term!) to literary criticism of William Blake. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-five-year resident of San Francisco, where he lives with his fiancé Rick. He read two of his pieces at the National Queer Arts Festival in San Francisco in June of last year.