Compassionate Courage: A Retrospective of Lisa O'Connor (1962-2004)

We still have a long way to go before people living with HIV or AIDS get treated with widespread compassion and understanding.

-- Lisa O'Connor

Lisa O'Connor with her daughter Marisa.

A leader from the ranks of HIV+ women who contributed to the campaigns against HIV/AIDS and HCV (Hepatitis C Virus) has passed away. Lisa O'Connor died surrounded by her family in Southern California on Thursday, November 18th, 2004, while waiting for a liver transplant. Lisa fought hard throughout her life. She struggled against many challenges including addiction, incarceration, HIV/AIDS, and HCV, in order to create a life full of love, hope, and joy.

As the youngest of four in a family of strong and beautiful women, Lisa strove to keep up with her older sisters. As a child she was described by many as a "gorgeous and radiant little being." Her mother spoke of her as a having a "tender heart and a generous nature." She was also an adventurous soul who enjoyed drama, playing, and the nightlife of Southern California in the early 80's. She was the first in her family, to become clean and sober. In 1989 she was diagnosed as being HIV+.

Lisa for many years lived her life as though she didn't believe that it was worth living, feeling hopeless. However, when she began her journey of recovery and health she came back with a fierce energy that transformed her life. She lived as though her life did matter. Lisa's contributions touched the lives of more women than can be measured. She was not only a strong and courageous woman, but she empowered others to be strong and courageous as well.

It was the privilege of many organizations to not only serve Lisa, but to have her as a part of their team. She contributed to the work of WORLD, Marin AIDS Project, Bay Area Perinatal AIDS Center, Alameda County Health and Human Services, ACT-UP, Walden House, Phoenix House, the Women's AIDS Network, and Women at Risk, to name a few. At Walden House Lisa was one of the founding counselors of Planetree Program, one of the first AIDS programs within a treatment center in the U.S.

Lisa contributed to WORLD's newsletter on numerous occasions. Each contribution reflected a chapter of her own life and continued growth. In her first article, The Courage to Change, she spoke of her experiences of being diagnosed HIV+ after a 10-year battle with alcohol and drug abuse. Even after her diagnosis, she admitted that she "used [her] addiction to hide [her] fear." But she also shared how she was "... able to get the courage and support to walk through my fears of living with HIV and take the necessary action to take the best care of myself that is available to me."

A year and a half later she wrote the first letter from a positive woman in prison: Letter to WORLD from a Friend in Jail. Lisa candidly shared her continued challenges of negotiating the relationship between HIV and recovery, as well as the realities of living positively. "The isolation and prejudicial treatment of incarcerated persons with HIV can be devastating," Lisa said. Lisa spoke of how people in prisons often "will choose to be silent, afraid they will be ridiculed and eliminated from activities. So they forfeit their access to newsletters, medications and the minimal support groups offered."

Years later she would appear in a video and suggest, "just because I'm HIV+, an addict, and a criminal doesn't mean that I'm not deserving, or that I don't have a heart and can turn around and transform my own life."

Lisa also openly revealed in her Letter from Jail, that the "root of [her own] fear of facing life without dope and booze was [her] HIV diagnosis." She shared that it wasn't until she was "encouraged to talk about my shame, my struggle with living in a world where I felt dirty and contagious, my feelings of deserving it, and the tendency I had to give up and sell myself short," that she then began to deal with her issues around living with HIV.

"I began living in the solution," Lisa said. Through her journey of recovery and health she learned that she could "somehow take the strength out of the killer virus by speaking out and helping others, whether by teaching teens about condoms or by reaching out to someone caught in the pain of isolation of those afraid to 'come out'." Lisa's article also included a list of "What works for me":

1. I do feel that trusting in and receiving strength from a "higher power" is helping in both living with HIV and recovery, as we are powerless over our addiction and the virus.
2. Living just for today, or one day at a time (since there's no guarantee we'll die this way, anyway [smile]), keeps me from future-tripping about either disease.
3. Receiving through giving works well in both areas. AA (Alcoholics Anonymous) says we can't keep what we have unless we give it away (meaning sobriety). For me, public speaking and sharing with newly diagnosed, scared people was very empowering and emotionally rewarding.
4. Sharing about HIV in 12-step meetings because, to me, these are not "outside issues" but a central part of who I am in my recovery.
5. Being involved in support groups helps; so does attending the fun stuff like picnics, dances, HIV+ women's retreats and potlucks.
6. Finally, what worked for me was telling people of my HIV+ status and my recovery from addiction as I felt comfortable with it (there are no "shoulds" or "have tos"). I open up, as I feel safe.

She then added, "HIV and recovery taught me two lessons: 'keep it simple' and 'easy does it' ... but do it!"

Finally, in the February 1997 edition of WORLD's newsletter, Lisa wrote an article entitled, Love after Diagnosis, in which she described her personal journey of negotiating intimate relationships as an HIV+ woman. She started by explaining what many women feel when they first learn that they are positive, "When I tested HIV+ in 1989, I felt like my world had ended." She proceeded to tell a story of breaking through her fears, and finding within herself a strength to not only carry on, but to serve other HIV+ women. "Life blossomed in so many ways that I never thought possible for an addict with HIV." Once she learned to love herself completely for who she was, she also found a man to love and share her life with. She knew that with or without this man, she was deserving and she was living her life to the fullest.

Ultimately, Lisa and Pete married in October of 1996, and in June of 1997 they had a baby girl, Marisa (now 7), who is negative. In a family video filmed at the birth of Marisa, Lisa was asked why she chose to have a child given the risks of her being HIV+. She answered thoughtfully. She had thoroughly researched the latest medical issues and felt that the risk was low, and that there were treatments available to enable her to live a prolonged life. Moreover, Lisa had thoroughly considered the "moral" aspects of giving birth to a child as a woman with a chronic illness. She felt that she had a strong and capable network of family and friends who would care for Marisa when and if the time came. And Marisa was Lisa's greatest gift.

As many others remember Lisa now, it is never for "one certain thing." Remembering Lisa includes remembering her passion, her loving devotion to her daughter, her creativity, her honesty, her humor, her ability to tackle any project or challenge ahead of her, her intelligence, her patience, her hopefulness, her fearlessness, her willingness, her positive attitude, her commitment, her gutsy and bold approach to life, and her compassionate courage as Rebecca Denison suggests. Her sister Lora described her as one who had the "courage and willingness to stand up and learn how to love [herself]." Lisa was a "great example of 'walking one's talk.'" Monica Foster described her as "A true example of what it is to be true to oneself."

Lisa was a tireless advocate. She fought for any HIV+ woman in need, regardless of that woman's own background and experience. She always spoke out on behalf of others to empower them to live a new and better life. So many women found the safety and solace of WORLD (and many other organizations) through the efforts of Lisa. If Lisa went through something, and felt others might benefit from her experience, she shared her understanding and know-how selflessly. She was known for writing a candid article on her own struggles with HIV and recovery from prison, or tackling a research project on HIV+ women and pregnancy with no formal research training or background. She learned from those around her, and "followed in their footsteps, aware that other women are getting courage from my choices and risks as well."

In an effort to continue to honor Lisa O'Connor, Women At Risk has instituted an annual award, the Legacy of Courage Award, for a positive woman who contributes towards the education and advocacy of other positive women. The first award will be given at the Women At Risk benefit, "A Legacy of Courage: the 7th Annual House of Blues Gospel Brunch Fundraiser" on May 22, 2005. (For more information go to www.womenatrisk.org).

Lisa's family is also planning to sponsor a fund-raising event on the anniversary of her death to benefit WORLD and Walden House.

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