I had been in the closet about my own HIV status for 15 years in 2007 when someone put me in contact with BABES Network at the YWCA in Seattle, which has provided peer support for women living with HIV since 1989. I had been president of the Seattle World Trade Club, and one of BABES' board members -- knowing my theatre background -- asked if I could help out with a workshop. I longed to serve the HIV community beyond donating money.
I had theatre experience, including writing, directing, and acting. I trained as an actor at the Lee Strasberg Institute and in vocal performance at Richmond College in London, England. I had founded a theatre group based in London's historic "The Crown" pub. I also directed, acted, and toured with the Copenhagen Theatre Circle around Europe. My original plays and a parody musical were part of the repertoire of both groups.
The 20 women who met twice weekly in the downtown Seattle YWCA building for the workshop came from a variety of racial and socioeconomic backgrounds. About half the women, including myself, had had an AIDS diagnosis at some stage. Some women in the group had children who were HIV positive, as well. One woman was homeless. She had to leave rehearsal early to line up at the nearby shelter.
We started the first sessions by telling our own stories. The stories always began with how and when we thought we contracted the virus. One woman contracted HIV after she was raped. Another young woman contracted HIV from a husband whom she then tried to murder. She was then arrested and served time. Many had been drug users. Some had engaged in sex work.
Most of these women had endured hardships and experiences that were far from my upper-middle-class suburban upbringing and my current life. They were heartbreaking stories of dealing with discovery of contracting the virus, subsequent illness, and, in some cases, recovery. As each woman told their story, most of us broke into tears -- and if someone needed a hug, there was one offered. At that stage, I had been dealing with HIV and AIDS for over fifteen years,but it was not part of the fabric of my life. I had probably contracted HIV in 1986 from my husband, who died in 1994. I did not receive an AIDS diagnosis until 2004.
When it came to telling my story to the group, I realized the virus had become a small part of my life. I rarely thought about it, apart from taking my daily pill and my semi-annual blood work. However, I could not hold back the emotion when describing watching my husband and uncle die. My husband had AIDS-related lymphoma, and my uncle died of Kaposi's sarcoma. The stories eventually became the backbone of a show we put on together, called Positive Dreams: Weaving Stories of Sisterhood. It was a 90-minute theatre performance that combined storytelling, comedy, music, and dance, written by women affected by HIV.
During meetings, we commiserated on the burdens and fears of living with HIV. The initial sessions were very emotional. We would often cry as a group. After a month, as we retold and shaped our stories for the show, we became less visibly upset. However, sometimes the women would insert new details into their stories, and that would make us cry all over again. Some of us still lived with survivor's guilt, as many we knew and loved had died before getting access to the new antiretroviral cocktail.
Some seemed to cope better than others, and many relied on government assistance and access to public medical care. We heard stories of not responding well to medication, stopping treatment, as well as dealing with side effects. Some told of being ostracized from their families, but others had managed to build new lives with new partners.
I had been closeted for decades about my status, illness, and losing my husband and young uncle to AIDS in the early 1990s. When telling my own story at the workshop, I was embarrassed by my privileged, upper-middle-class experience when I received my AIDS diagnosis. My experience was vastly different. I had assets, a Rolls-Royce employer health plan, a supportive family, and a senior management job I could return to after a long hospitalization. Not only did I have survivor's guilt, I felt guilty about having sailed through my own diagnosis and illness as compared to the other women. However, I paid my dues years before, when dealing with my husband's ordeal, his subsequent death, and rebuilding a life with my young son from bankruptcy to solvency.
Given my theatre production background, I took the lead in arranging the monologues, dance numbers, scenes, and musical numbers. I convinced half of the group to participate in a musical finale and to let me teach them how to "talk sing" by matching spoken words to a beat.
My HIV-negative, 16-year-old son wanted to become a sound engineer. Getting him involved in the show's music track would serve several purposes: his first production credit, community service, and another perspective of fighting the AIDS crisis. He was unique in that both of his parents developed "full-blown" AIDS and he hadn't experienced any change to his lifestyle. My son had lost a parent when he was only 3, and he has no memory of the event. I was hospitalized when he was 11, and he does remember being told how sick I was. However, after a couple of months, I had recovered enough to return to work and family life.
I think it helped everyone to have new perspectives, especially on the "blame game" in cases of being infected by a partner. It was evident who held resentment and anger and others who had successfully let it go. It was important to set the right tone for the show while not diminishing the seriousness and passion of our stories. From a theatre producer's perspective, I suggested a well-rounded evening of entertainment. Everyone agreed to insert humor and satire throughout the performance.
As I wrote my own script, I dealt with my privileged status head-on and asked the women to contrast it with their very opposite experience. I recounted my hospital care, where I had a team of top medical professionals. I described having food delivered to my bedside from a local restaurant, ordering extra-virgin olive oil for my salad, a medium-rare steak, and a Perrier with lime. Once I could get out of bed, I had a manicure and my hair styled in the hospital. A Greek chorus behind me would describe horrific hospital medical care experiences in public hospitals.
For the final number, we sang the Stephen Sondheim song, "I'm Still Here," from the show, Follies. It was about a reunion, in a soon-to-be demolished theatre, of dancers and singers now in their fifties and sixties. The lyrics resonated with the group: It was about an older woman who reminisces about life's challenges and how she survived. I challenged the group to write their own lines inspired from their own struggles. I adapted them to match the music.
The Positive Dreams performance was held at the Central Cinema in Seattle's Central district in a 120-seat theatre with a stage. We nearly filled the theatre for three consecutive nights and one afternoon performance.
Our opening number was an upbeat Count Basie tune, during which several of us ran through the aisles and threw condoms into the audience. We had comedic scenes staged in HIV testing clinics. I wrote a scene about AIDS widows who had acquired HIV from their husbands who had passed. I sang a song, "Hey Hey Hubby," to the tune of the 1963 pop song, "Hey Paula," along with another BABES member, Pat.
The show also seemed to help all the "babes" reduce our fears of illness and death. Many of the women who participated went on to flourish, find new careers, and stayed sober and clean. Sadly, one died some months after the performance. Though I no longer live in the Seattle area, I maintain contact with BABES Network through their newsletters and their annual gala event and continue donating when possible. I noticed that some cast members publish essays and blog posts that end with the phrase, "I'm still here."
Excerpts from Positive Dreams finale lyrics:
"I'm Still Here"
Fell off some chairs, drank too many beers
I've seen my dreams disappear.
To jail and back, drugs, needles, sex, just for fun,
But I'm still here
Active to lazy, muscle to fat
When you've been through sickness,
Hospitals and blood draws,
Handfuls of meds are a matter of fact.
But I'm here … still here
Been called a druggie and a hooker too.
Slept near a dumpster, beat black and blue
I could have wasted away, but
Three dress sizes later, can you see me, ladies?
My viral load is clear
Hocked my computer to pay for the dope
Doctor to doctor, clinic to clinic, what a sick atmosphere,
Screw you, my meds are truly working -- I'm still here
Whatever happened to my T cells?
Was it that needle in my purse?
Or the man was on the down low?
There's nothing to do but curse.
We've done it all -- Atripla to A-Z-T
But we're here, still here!