How the 12 Steps Have Helped Me Cope With HIV for Over 30 Years
In 1986, nine months into my recovery from drugs and alcohol, I started living between New York and Cambridge, Mass., the home of my fiancé and his 15-year-old son. My friend and former roommate Laurie had just died -- of "a rare cancer," her obituary said. But I knew the real story. She'd died of AIDS-related complications, making it perfectly clear to me that women as well as gay men could get HIV. Both Laurie and I had a history of intravenous drug use and bisexual boyfriends.
I felt perfectly healthy, but I was nervous. I decided to get tested for HIV. And on April 12, 1987 -- my thirty-third birthday -- I learned that my test was positive.
I dropped to my knees. I felt like I'd been handed a death sentence. There was no cure and no effective treatment. I'd have no children, no sex, no career. I had no hope and barely any information. When my fiancé came home and I told him the news, he locked himself in the kitchen and started bawling. What had I done? Had I infected him? He was a single parent. Would his son lose him?"
She said, "Don't worry, baby. You just go to a [12-step] meeting, talk about it and then talk about how you're going to stay clean today and get more information."
I took her advice. I went to a meeting and, trembling, I raised my hand and shared in a room of addicts that I had just tested HIV positive. First, there was a deafening silence. But then, I was embraced, surrounded with love when I didn't think I was even touchable. I realized that if the 12-step program had worked for my addiction, perhaps it could work for my HIV until science created a breakthrough. What did I have to lose?
And that was the beginning of the 12 steps of recovery that helped me navigate this often-terrifying 30-year journey of living, not dying, with HIV. I realize that sheer biological good luck, in addition to the healthy choices I made after I stopped using, have played a big role in why I'm here today to tell you this story. I know others who followed the 12 steps and were not so fortunate. But, I am still grateful for how the 12 steps allowed me to think and feel about my disease and make it bearable.
Allow me to take you through those much-celebrated 12 steps and show you how I put each of them to work toward my accepting and even surviving this disease I feared so much.
Step One: I admitted that I was powerless over HIV and my life became manageable.
My first step was accepting the simple truth that I could not undo my diagnosis. I had an incurable and terminal disease, similar in some ways to the challenges of addiction and alcoholism. I'd already learned that not using substances kept my life manageable. I could "show up" for key people and events in my life. I was coping and not suicidal.
Accordingly, I realized that if I didn't use drugs or engage in other destructive behaviors, I could possibly survive HIV without medications. On one hand, I feared that if I accepted the power of HIV, I'd be doomed. But my sponsor wisely pointed out that I didn't have to like having HIV in order to accept it. So then, I had to ask myself, "What did I have power over?": my actions. I hoped that by taking the right ones, I would live.
Step Two: I came to believe that a power greater than myself could restore me to sanity.
I was restored to sanity. I was no longer killing myself every day with drugs and unprotected sex. I was no longer repeating the same mistakes and expecting different results. I was drug free and surrendering daily to this 12-step spiritual solution.
Though I was not raised religiously, as a child my mother read me a simple book about God being everywhere: in the clouds, in the trees, in the grass. So, I had a strong connection to God in the universe. For example, I believe that people carry you the message you've asked for; they tell you just what you want to hear today or need to hear today. As my recovery progressed, so did my relationship with God: a deeper and knowing feeling. My intuition was growing stronger, and the voice in my head, once loud terrorist chatter, was smaller. It's a long journey from the head (where the addict lives in self-will) to the heart -- that God-shaped place that fills with love and service. These were things I would hear in my 12-step meetings and light my way toward healing and health. That brings us directly to the third step: faith.
Step Three: I made a decision to turn my will and my life over to the care of that power greater than myself.
I'd always heard that God wouldn't give you more than you could handle. Well, God had overestimated me! I felt overwhelmed! My sponsor said, "Ask for help." So, I did. I was grappling with whether I should go on AZT (Retrovir, zidovudine), the first HIV drug. My answer came in a 12-step meeting from someone I didn't even know. He simply said, "If it's not broken, don't fix it." So, I didn't go on the drug, and with what we learned in later years about the ineffectiveness of taking AZT alone, I'm glad I didn't.
Instead, I read my daily meditations each morning, hitting my knees and praying my own personal prayers. I believed that God was in everything even though it could be hard to see. Isn't that what faith is? I'd been a hopeless addict who was now clean and living with dignity. That revealed my strengths. I went to 12-step meetings regularly, listening, sharing and helping others. That helped me stay off the pity pot!
What's more, I had someone who loved me and married me despite friends who were advising him otherwise. No, I couldn't have my own baby, but I was given a 15-year-old stepson I adored who was waiting for a mother. Then, another miracle happened. In a 12-step meeting I attended, a Harvard professor asked whether I'd be willing to speak at the university, at a new research program on addiction and HIV. I said yes, which led to the program offering me a job counseling drug users receiving their HIV test results. The worst thing that had ever happened to me had become a gift I could use to help others.
Step Four: I made a searching and fearless moral inventory of myself.
The fourth step urges us to find the courage to excavate our own inner lives, bringing dark secrets to the surface so that they no longer block our spirits from the sunlight. I'd felt guilt and shame from being molested as a child, so I'd acted out using sex and drugs, which contributed to my getting HIV. At the time, that was the best way I knew to seek comfort. I had resentment about HIV; it had affected every area of my life: my income, my self-esteem, my sex life and my relationships. The solution was prayer to show me the way out. I found a new way to earn money; I have responsible sexual behaviors using protection; and I continue to be of service, so my self-esteem rebuilds. Estimable acts give you self-esteem.
Step Five: I admitted to a Higher Power, to myself and to another human being the exact nature of my wrongs.
I shared my fifth step with my sponsor. She gently pointed out my character defects, how I had come up short in certain situations in my life. What was my part in altercations with others? Was I nursing resentments? Was I ready to take responsibility for my past actions -- and to move forward taking opposite actions? Was I ready to love instead of hate -- to not act out in jealousy or rage, but to pray for others' happiness?
By this point, HIV and other factors had strained my relationship with my husband. We separated, and he eventually remarried and had a child. I made myself pray that he would get what he really wanted even if it didn't include me.
Throughout all this, my sponsor identified with my loss and shared her own losses with me. My sexual behaviors, my drug using, my self-hatred and self-centeredness, my jealousy: she knew where I was coming from. The process was humbling as I realized that I was not uniquely bad. I was simply human.
Steps Six and Seven: I was entirely ready to have my Higher Power remove these defects of character -- and I humbly asked my Higher Power to remove them.
I had to turn self-hate into self-love, self-centeredness into service to others. I had to "fake it till I could make it," and act "as if" I were a selfless person until those actions became authentic. I put on a smile and carried a message of hope when I wasn't always feeling hopeful. But when I did, I began to feel better. I was of service to others by sharing that hope and, in return, I felt the hope I had delivered.
There was an instance when I was resentful of someone in a meeting and my sponsor directed me to go give her a hug whenever I saw her. I thought she was crazy, but I was willing to take her direction. I did, and to this day, I can't remember what I was resentful about. We became friends.
I pray that I stay out of my own way so God's will can be done, not mine. Being human, I will never be perfect, so this is a daily practice and reprieve contingent on that practice.
Acting counterintuitively like that felt awkward and simplistic at first, but it slowly worked against my internal beasts of self-hatred: shame and blame. Suddenly, I was no longer a victim, but a volunteer.
Steps Eight and Nine: I made a list of all persons I had harmed and became willing to make amends to them all. I made direct amends to such people wherever possible, except when to do so would injure them or others.
Step 8 is simple. Just make the list without thinking of the amends. As suggested, the first person on my list was ... me. I'd done myself the most harm. I also had to contact a few men I'd slept with before I knew I was HIV positive to tell them my status.
Once I made this list, I carefully went over it with my sponsor to discuss how or whether I should reach out to people -- including people I didn't like but still felt I owed amends to -- without expectation of receiving their acceptance and on their terms, not mine. These steps were not about looking good or about my own ego. They were about doing the right thing and always getting closer to God. My sponsor said, "If you think you're going to come out of these amends smelling like a rose, you'll be disappointed and not have the right intention."
As for people on my list who I felt were dangerous or were no longer alive, I wrote them a letter that I obviously didn't send, but shared with my sponsor instead. Then, I prayed for them. One in particular was a woman I knew rather well and with whose husband I'd had a love affair. She was aware and even enabled us, calling me his "real wife." I called her to ask whether she was willing to meet with me, said that I'd like to offer amends. "No!" she yelled into the phone followed by name calling for several minutes, then she slammed the phone down. I had to take it in silence and just say, "I'm terribly sorry." I had to accept that this was not an amends I could make in the way I wanted to, but I had done my part. I also felt the pain she was in and would never want to be the cause of that again. Honestly, I don't blame her for her anger. It is a great lesson in humility and acceptance. Amends is never repeating that same mistake with anyone again. It is not an apology.
Another amends is the daily one I am living as my mom's caregiver. I didn't get along with my mom most of my life, and for good reason. She was violent; she had no boundaries. There was a long list of resentments that popped up even though I worked on them. I think back to no one taking care of me, the engagement ring she took and had reset to her taste and which I never wore again, the lifetime of constant calls by her obsessing about my father and what he was doing -- not asking about me. The list is long, but I made a decision years ago with my therapist that I wanted to continue a relationship with my mother while keeping strict boundaries: phone calls and short visits. But now that she is elderly and I am the only family member stepping up, I see her everyday. It is a challenge, and I'm always asking God for help.
Contacting former lovers and disclosing my HIV status was scary. I had an ex who was bisexual, and who I already knew was HIV positive. When I told him I was, he replied, "Darling, who isn't?" I'm so grateful that we remain friends to this day and still care about each other. Thankfully, other exes I contacted about my status ended up testing HIV negative. One had already died of AIDS-related complications before I could reach him.
Step Ten: I continued to take personal inventory and, when I was wrong, I promptly admitted it.
My aunt used to tell me to never go to bed angry. She already knew what I needed to learn. On a regular basis, I would take an inventory of my day and what was I was grateful for: not waking up in a hospital, my health. I'd ask myself these questions: Did I help someone today? Did I feel a part of humanity today? What steps and spiritual principles did I work on today? What did I do to take care of my health today? This "daily inventory" helped me reduce the risk of relapsing into my old behaviors, as I aimed to live a sober and meaningful life with HIV.
Step Eleven: I sought through meditation and prayer to improve my conscious contact with my Higher Power, praying for knowledge of my Higher Power's will for me and the power to carry that out.
Having been raised Jewish, I'd always been resentful that I'd not had a bat mitzvah when I turned 13. In sobriety, at the age of 42, I was invited to join a congregation on their trip to Israel and to finally have that bat mitzvah, as well as to speak about living with HIV at their temple. In my women's 12-step meeting in the states, I collected tiny prayers on pieces of paper, which I then put into the Western Wall in Jerusalem, where thousands have come to pray for centuries. At that moment, it felt as if my very life were an answered prayer.
Step Twelve: Having had a spiritual awakening because of these steps, I tried to carry this message to others struggling with addiction and/or HIV/AIDS.
Sponsorship is the heart of my recovery program, and it taught me how to be of service in other communities. I loved being a sponsor and, at one point, I had so many that I had workshops at my house in Boston so they could all connect with each other and not be dependent on me alone, but learn to reach out to their sisters.
My HIV service as a counselor began in 1989 and continues in different capacities today. I began as a public speaker and educator; I did outreach testing addicts for HIV, gave results, counseled, facilitated HIV support groups, served on several boards over the years -- in Boston and Los Angeles -- sang at fundraisers and created my one-woman show about addiction and living with HIV. I spoke at 150 schools a year during my 12 years living in New England. I was a consultant and trainer for the UCLA AIDS Ambassadors, which continues to thrive today.
All one day at a time, 32 years later, it's history -- my history and all of ours, with love and gratitude, and still here.