I found out I was HIV positive in 1987, when I was 23. I had just started college and was getting my life going in a healthy direction when the news hit me. About three years earlier, I had ended a four-year relationship with a guy who had shot speed and got me into snorting it. He refused to have protected sex (and I didn’t insist on it) and was abusive in other ways. My self-esteem was pretty low, which is why I stayed with him. When I found out I was positive, I had a “nice” boyfriend who had been living with me for a year. We called each other soul mates. That changed the instant I told him I tested positive. He immediately treated me like a leper. 1987 was one of the scariest periods of AIDS hysteria, and he bought into the fear. He wouldn’t share soap, towels, dishes, etc. We discontinued having sex, and there was no other affection. Even though we had unprotected sex the previous year, I never transmitted HIV to him. This is an example of the huge disparity of HIV being transmitted by men to women via sex, but not vice-versa.
Luckily, two things saved me from going crazy during this time:
1) I was in college full-time, and it distracted me from thinking about the dreaded topic of HIV. I loved being an art major and enjoyed so many other classes I took.
2) I got very involved with the communication department at AIDS Project Los Angeles (APLA) and began doing public speaking and appeared on several well-known TV programs. I was featured as a narrator and cohost of an HIV prevention video. It was successfully marketed and used in schools. I narrated another educational video, which earned a standing ovation when it debuted at a prestigious HIV conference. I recorded a public service announcement for Warner Bros. Records, and my story was used for an ABC Afterschool Special. These are a few examples of things I got involved with because my goal was to turn my lemons into lemonade and help educate others and give hope to people living with AIDS. I was also asked to be a panel speaker for a regular weekend seminar that helped folks who were newly diagnosed with HIV navigate the options available to them.
Finding out I was HIV positive allowed me to appreciate and value my life for the first time. I became healthier than ever before.
Helping others became a very empowering thing for me, and I changed paths in college. I got my bachelor’s degree in 3-D art, then went into a grad program to become a marriage, family and child counselor (MFCC). I hoped to incorporate art therapy into my career whenever possible.
The first of my three interesting internships was at a drug treatment center, where I did individual counseling as well as facilitating support groups for HIV-positive residents. Some of them were referred to the program from prison, where they were isolated from the general population and treated badly. The second internship was at a mental hospital where I worked on a teen unit for the first six months, and an adult day care unit for the final six months. The third internship was with a program for children and adolescents with special needs. They had group homes for severely emotionally disturbed adolescents, as well as a special education school. I worked as a residential counselor with six girls and led support groups with male students at the school. Interns received weekly group supervision sessions with a licensed therapist, where we’d review and discuss our work. These hours were applied to the total number needed in that category, to earn an MFCC license.
A year into the program, my ex-boyfriend—the one who had treated me like a leper, began an internship with the same agency, and joined my same supervision group! There were only about seven of us interns, in a small office. I quit shortly thereafter, for a couple of reasons. It was awful having to be in that room with the jerk whose abusiveness seriously messed with my self-esteem and well-being. The fact that we were studying towards a degree in mental health while working in the field, made it that much more ironic and difficult for me to be there and not blurt out how he acted. The second reason for leaving was due to HIV discrimination I encountered, after disclosing my status to a supervisor.
During this time, I bought a ’52 Packard from a friend I met in a support group for HIV-positive heterosexuals. A woman in the same group invited me to sign up my car with her motion picture car locator company, and the next thing I knew, I was working as an extra in the movie Ed Wood, which was set in the ’50s. I got many more ’50s film gigs after that, including the series Rebel Highway, which was a remake of 10 B-movies, each with a different director and cast. I joined the Screen Actors Guild. I got married to Johnny Depp’s bodyguard from Ed Wood, and we moved from Los Angeles to Albuquerque.
I worked at the New Mexico Association for People Living with AIDS (NMAPLA) and was the education and advocacy coordinator. I ran a statewide HIV speakers bureau, which included conducting trainings statewide. The agency folded, and I started work in case management at the University of New Mexico Hospital. My cases fell under two categories: people who were disabled and/or elderly and people with HIV/AIDS.
When the state went into an HMO heath care system a year later, the HIV case management for my area moved to New Mexico AIDS Services, and I moved with it. My highest case load was about 73 clients.
In 1996, I presented my master’s thesis, titled “The Effects of an HIV Diagnosis on Heterosexual Women’s Intimate Relationships," on a panel at the XI International Conference on AIDS in Vancouver. My abstract was published in the conference book. My study was a qualitative one and looked at how different women living with HIV were faring in their romantic lives.
In New Mexico, I was very much an activist. In addition to working in the HIV field, I was on the HIV Coordinating Council of New Mexico and on the Governor’s HIV/AIDS Taskforce. I also did some lobbying. Two coworkers and I met with the governor and urged him to pass a needle exchange bill, which he did. I was featured along with my then husband in an article in the Albuquerque newspaper about sero-different couples (I refuse to use the term “discordant”). My husband, who was Chicano and part Native American, would accompany me to HIV speaking engagements on reservations.
Our marriage broke up after three years, and he stole my dog and moved back to Los Angeles. I had an emotionally abusive relationship with a coworker after that, which was part of why I had a nervous breakdown and left social work. After I recovered, I began an excellent massage and natural therapeutics program, which was conveniently close to my house. I graduated and became nationally certified as a massage therapist and eventually moved back to Los Angeles.
The Los Angeles Police Commission is in charge of licensing massage therapists, and at the time, they were discriminating against licensing people who tested HIV positive or who had hepatitis C. Applicants needed to provide letters from a doctor attesting to their negative status. I knew this was against the Americans with Disabilities Act and filed a federal grievance against the Police Commission. This was done with the help of a lawyer with the HIV/AIDS Legal Services Alliance, or HALSA.
The case went on for a year. Meanwhile, I was training to run an AIDS Marathon in Chicago and was working as a masseuse at Women Alive, an AIDS group for women, modeled on the LA-based organization Being Alive.
After about a year, I won the case. There was no money involved, but it was empowering to be able to change the system. There were stories published about it on TheBody.com and in APLA’s newsletter. Sadly, the whole thing messed with my enthusiasm for my new career. Plus, massage therapists are often devalued and treated with suspicion as to whether they do things like “happy endings.”
In 2001, I reluctantly went to my 20-year high school reunion and reconnected with a guy who had been in my grade. We’d had the same classes since fourth grade. In fifth grade, we even had a two-hour romance. We have been in a happy sero-different marriage for over 18 years. I also have a beautiful 26-year-old stepdaughter. Things have been great, except in 2008, which is when I went through chemo and radiation for HPV-related cancer.
For the past 10 years, I have been facilitating an international group of women, on Facebook called Budettes. In addition to the active Facebook group, those of us based in Los Angeles had monthly gatherings and outings and have done many wonderful things together. The group is not only for people living with HIV, but there are many women who are HIV positive in the group, including some very well-known activists. We also have women who have gone through cancer and other health issues, either physically or mentally/emotionally. We’ve always been very supportive of women and emphasized that our beauty comes from within. We are a health-based group and accept women of all body types, ages, ethnicities, sexual preferences, etc. We just don’t tolerate intolerance.
Since April 2020, we’ve had weekly support groups, which ended up having positive and uplifting themes, along with craft tutorials, alternative healing groups, dance groups and more. The virtual format has been very helpful in uniting women outside of the narrow confines of Los Angeles, who were unable to always get together in person. I’m very proud of this group.
I’m also proud of the fact that I’ve been involved with Café Europa, which is a social and case management program of Jewish Family Services. They hold weekly gatherings with entertainment that enable Holocaust survivors to have a fun experience together. I’ve also run a men’s support group for almost three years. I visited one Holocaust survivor at home every week for two years, before he passed away. It was great to take him to celebrate his 90th birthday in a restaurant and have a group of servers sing happy birthday to him.
I’ve been in a memoir-writing course during quarantine because I’d like more people to read my story and be inspired by the lessons I’ve learned in resilience and how to have a happy and meaningful life, despite difficult circumstances.
What three adjectives best describe you?
Resilient, compassionate, feisty.
What is your greatest achievement?
My greatest achievement is overcoming a lot of obstacles and challenges. I’ve managed to survive some of the scariest health conditions, like AIDS and cancer. I’ve dedicated my life to helping others.
What is your greatest regret?
Connecting with an HIV-positive guy I met at a conference I attended for HIV-positive heterosexuals.
What keeps you up at night?
Politics and the people that support corrupt and fascist politicians. I think about how low our standards of decency have sunk and how many people are racist, misogynistic, homophobic, etc.
If you could change one thing about living with HIV, what would it be?
I’d remove stigma associated with HIV/AIDS. This would help everyone. It would reduce mistreatment and discrimination against people who are HIV positive, and positive folks would feel better about themselves.
What is the best advice you ever received?
My mom taught me that things aren’t black and white; they’re shades of gray. She also taught me that outcomes I didn’t like were still valuable as lessons for the future.
What person in the HIV/AIDS community do you most admire?
I admire Ryan White. He overcame discrimination and ostracism by his school, peers and neighbors and became a huge activist. He increased compassion for people who are HIV positive.
What drives you to do what you do?
I enjoy helping others. It makes me feel good and helps to keep me from worrying about my own issues. If the painful things I’ve been through can be shared to help others, then they become valuable.
What is your motto?
“Be the change you wish to see in the world.”
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
I’d grab my laptop computer. It has so much information and on it—my writing, great articles I’ve saved, my music and almost all the photos from my albums.
If you could be any animal, what would you be? And why?
I’d be a monkey. They seem to have a lot of fun, swinging around from limb to limb on trees and just being very playful. They play well with others and seem to enjoy hanging out together.