Home: Miami; Age: 56; Diagnosed: 1987; Faith: Islam
I was brought up a Baptist. But when I was 12, running the streets of New York City, I’d go to rallies to listen to Malcolm X.
I enlisted in the Marine Corps and went to Vietnam. When I came back,in 1968, I was still on the wild side. I got addicted to heroin and cocaine, and I was robbing banks. I went straight from the jungle in Vietnam to the asphalt jungle in New York City, and I was a loose cannon, with a lot of anger and no spiritual direction. That’s why I was using drugs. I was searching, but I didn’t know what for. A year later, I got arrested and sent upstate to maximum-security Greenhaven State Prison. It was a God-given thing because if I hadn’t gone to jail, I would’ve been dead long ago. My whole life was styled in a death mode, and now it’s life! Everything is geared to making a difference.
Piece of the Rock
In jail, at 25, I had the opportunity to reflect on my life. I was exposed to Islam, and got the chance to study the Koran, like Malcolm X. You have choices when you’re incarcerated -- either you get rehabilitated or you get more educated in criminal activity. I chose to try to make something. Inside that prison, you had the Black Panthers;gangsters like the Gallo brothers; and Nicki Barnes, a big drug kingpin. I was caged in with men who had life sentences, walking time bombs. So I was a loner, but when brothers from the Nation of Islam approached me, I absorbed as much knowledge as I could.
Once I got out, I registered in the Nation. Minister Farrakhan teaches the truth: We were brought here as slaves and were murdered and discriminated against; our culture and religion were robbed. We didn’t know who we were. That was my problem, too. Transitioning out of the military as a black man in America was hard, dealing with white supremacy and racism. These experiences attracted me to the Nation’s teachings: to do for self, be proud and know your heritage; not to feel inferior.
Islam means peace -- to respect everybody and treat people the way you want to be treated. It’s not lip service. We practice what we believe in, through charity, prayer, diet. We don’t commit adultery or eat prohibited foods. We pray five times a day. But I don’t believe in just sitting around singing; I try to live my life as a prayer. With the Nation, you can’t just say, “Praise the Lord.” You have to be active.
HIV saved my life in that it told me I had to find some direction. When I tested positive, I was already on my spiritual path, but still struggling, drinking and smoking marijuana. I was given two years to live. Though I was married with kids, at first I was inclined to use drugs, to say, “I’m going to die anyway.” But my post-test counselor tapped into my faith. Finally I said, “I’ll wait until God tells me my time is over.” So I stopped using substances by degrees, ate right and complied with my regimen.
I’ve been on a cocktail for three years. But I’ve survived because of a combination of diet, meds and spirituality -- that’s what fuels everything.
Home: Rochester, NY; Age: 45; Diagnosed: 1991; Faith: Christianity
My mother was an evangelist who raised me in the Pentecostal Baptist Church. I left home at 13, and I’m sure there was a seed planted, but I didn’t practice that religion once I was on my own.My experience is my belief now.
God Is My Copilot
I pray and meditate every morning. It’s my time with God, when I ask God to open my heart to love. I try to be a walking prayer, to include God in everything I say and do -- Reiki massage, cleaning my house, taking a shower. If I put God first in everything, I believe I’ll be OK. But I’m not a fanatic. My mother was fanatical: She took our money and gave it to the church, while we kids were starving at home. So I know the difference.
I go to church but I don’t belong to one because in churches people wind up praising the man instead of God. I’ve been led by men most of my life, and it’s been a negative experience. I go to church to praise God and for the fellowship, but I don’t get caught up in the conformities. I don’t need to change the way I dress or wear my makeup,the way I walk or talk. God loves me just how I am, even with all my faults.
Jesus Christ is my savior, but I also believe that there are guardian angels, African saints, Buddha. I believe in Reiki. All this allows me to be open, to live each day knowing that God loves me. My mother, God rest her soul, told me I was the devil’s child for many years. And I believed her. So for me to find a God who truly loves me...
When I was diagnosed, I said, “OK, God, what do you want me to do with this?” I’d used drugs since I was 13, so I should have been dead. Life was a miracle to me. I’ve never been on any HIV medications, yet I haven’t been sick, because of my faith. I absolutely believe in my healing.
A Touch of Grace
When I give a Reiki healing, I’m receiving one at the same time. Reiki not only heals physical pain, but emotional, mental and spiritual pain, too. One of the most important things for HIVers is human contact. So that’s what I do. I touch people from their heads to their toes, and I pray for them. I experience in my body what they experience -- I go right to where they’re having problems and I pray over that specific area. I’m able to let people know where and why they’re hurting because God is working through me.
Home: Orlando, Florida; Age: 49; Diagnosed: 1989; Faith: Catholicism
When I travel to my country, Guatemala, my first trip is to a little town called Esquipulas. I took my babies there, my mother took me, and her mother took her. At the base of a mountain, there’s a basilica with a big Jesus dying on the cross. The statue is dark -- they call it Cristo Negro. This is my santo, Señor de Esquipulas, and he’s made many miracles. I always bring him a little gift.
The Littlest Saint
At one time I had two jobs because my husband was sick, and I have two kids. I was getting sick too and couldn’t work, but I couldn’t qualify for Social Security because I had300 T-cells. So I went to Señor de Esquipulas and said, “Please help me.” The next time I went for my blood, I had only 162 T-cells. They immediately approved my Social Security! My T-cells have never been that low again. It was my miracle. Señor de Esquipulas also helped me get my papers to live in this country. But I do my part, too. We have a saying, “Pray to the Lord, but keep using the hammer.” I’m a poor Hispanic woman from a broken home, and I’ve come out ahead, all because of my saints.
When I was trying to buy my house, I promised Señor de Esquipulasthat if he helped me, I’d make a little corner for him. So there he is,on my front lawn, a little statue just outside my bedroom window by the tree. Every morning when I wake up, I look out my window and greet the day. I always stay there until I hear the birds singing; I know they’re singing for me because I listen. Then I joke with Señor de Esquipulas.He’s hanging on the cross, so I say -- and this might sound disrespectful -- “Hey, how are you this morning?” Then I answer myself,because I carry the conversation: “How do you think I am this morning,nailed to this cross?” And then we both laugh. I’ve had this joke with him for years.
Calling All Angels
Volunteering is a form of prayer. In Catholic school, the nuns taught me about sacrifices. It’s easy to do the things you like, but what really counts is when you do something you don’t like. I don’t like to go to the supermarket, but I make a special trip for someone who needs it. I visit people in the hospital when things are tough. I say, “Señor de Esquipulas, please take this as a testimony of my love for you.”
Having HIV has not been the hardest thing for me. The hardest was coming here at 15 without knowing the language. As soon as I knew a little, I started teaching people out of my home. When I became a U.S. citizen, I helped people do their immigration papers. I’ve always had a mission. So I know why I have HIV: because I need to do some work there. I think God said, “Too many have this and don’t do anything about it. Let me give it to this girl,because she’s very active.”
I’ve taken every medication, and I don’t have many options left. This is how I visualize HIV: I’m in one corner with my doctor, my family, my spirit, my medication all behind me; in the other corner is the virus. Once in a while, he slaps me. But sometimes I slap him. Every year on the anniversary of my infection, I bring a cake to my support group, and we sing happy anniversary to my virus and me. It’s to his advantage to keep me alive, because if I die, I go to heaven, but the virus goes to the bottom and that’s it.
One thing that’s helped me survive is knowing it’s OK to die. If I’ve done all I can, then it’s my time. When people die, they go to a better place. I’d hate to be eternal and end up alone here, like Dracula.
I don’t allow anybody to bring religion into my support group. The church says there should be no condom use.But did Jesus say, “Don’t use a condom?” No. One time we had a lady who came to pray. She said 14 Satans and only two times Jesus. I don’t want Satan, Satan, Satan all over me unless it’s the Church Lady on Saturday Night Live. So we don’t have religion -- we have faith.
Home: San Francisco; Age: 42; Diagnosed: 1995; Faith: Queer Christian
I was raised Catholic, but I’m no longer part of that church. For years I was a minister at the Metropolitan Community Church (MCC), a gay church in the Castro. There our candlelight prayers and chants have a mystical dimension -- something you can give yourself over to.
Calling All Angels
My faith has sustained me through many losses over the years, but it wasn’t about my own personal survival until I became sick. Then I had to rely on what I’d used to help bring comfort to others.
I’ve done a lot of AIDS work, so when I was diagnosed, I faced a great deal of embarrassment and depression. I had some dark periods where I used recreational drugs to cope, but therapy, prayer and faith helped me be more compassionate with myself: So what? I made a mistake. Seroconverting and the deepening of my faith has made me love my life more.
There’s Something About Mary
The prayer I found so helpful when I got sick was the Hail Mary. It’s part of the rosary. My late grandmother, who was very religious, used to pray to them. She always offered me unconditional love. So when I was sick and wanted comfort, I asked for a rosary. When you’re a child and you memorize a prayer, it doesn’t mean anything. But when you’re an adult and believe that you’re dying, those words mean so much. Now every Wednesday at MCCI light a candle and pray the Hail Mary for health, calm and equanimity about the unpredictable aspects of living with HIV. Mary is the feminine divine. When I pray, I picture my grandmother.
A Touch of Grace
Another thing that brought me tremendous comfort in the hospital was people touching me. When I was isolated and fearful, touch brought me back. The infusions of warmth made me feel better, made me feel. To me, that’s spiritual. Laying on of hands is a kind of healing prayer.
I’d never been to the gym before I was 30. I was phobic -- it was tied in to being gay and feeling inadequate. But when I was 30, I suddenly gained a lot of weight: I was doing a lot of funerals, and clearly I was eating my grief. I had to get back some physical balance so I forced myself to go to the gym. Now I go everyday and do a half hour of aerobic exercise on the Stairmaster. Although it’s physical, it is primarily a spiritual experience for me. I pray the whole time. It’s my time with myself, to see what comes up, and it’s helped me process the grief. The Stairmaster is for me what going to church is for other people. That and my prayer meetings form the substance of what I call formal prayer. The rest is gravy.
I’ve been on all kinds of antiretrovirals,and the side effects were awful. But the desire to live is a spiritual impulse. Spirituality reminds me that I am more than my body.
Home: San Francisco; Age: 40; Diagnosed: 1996; Faith: Judaism
My mother was born in Poland and emigrated before World War II. She grew up speaking Yiddish, so she has strong Jewishr oots, which she conveyed to me. My ties to Judaism were cultural.
Test of Faith
My diagnosis came out of left field, when my little boy was 11 months old. For about six months before that I was quite ill -- I was wasting and had thrush in my mouth -- but I was still breast-feeding. It took the doctors a long time to figure out what was wrong. This seems surprising because it was San Francisco,1996, but I’m white and middle class; nothing put up a red flag. The doctors just thought I was having a hard time adjusting to motherhood.My regular doctor finally recommended an HIV test. I had full-blown AIDS.
I felt like the bottom had been blown out of my world and there was no future, so I had a lot of healing to do. Judaism became very important to me. Now I’m committed. I practice.
Calling All Angels
There’s a wonderful Jewish philosophy, tikkun olam,which means “to repair the world.” It manifests itself in my life through my volunteer work. Judaism is focused on life on earth rather than on the rewards of the afterlife. It teaches you how to live your life in as holy a manner as you can. There’s a beautiful biblical quote, “I put before you life and death, therefore choose life,” which gives me strength to fight this disease.
I’m on combo therapy, and my health has improved in recent years. I’m living a pretty normal life, and I credit that with having faith -- in religion or in life.
Judaism is a warm, comforting religion. It emphasizes community, family and the joys of everyday life. The holidays are full of celebration. I felt a real spiritual connection at high holiday services this year; the music was so beautiful it made me cry. My family does Shabbat dinner on Fridays -- we light the candles and say blessings over the wine and challah. As a Jew, I have a strong sense of belonging, and I want my son to have that foundation.
Pay It Forward
I’ve written a book about my experiences as a Jewish woman with HIV [Penitent With Roses, University Press of New England]. One part is a long letter to my son, what Jews call an“ethical will”: It doesn’t have anything to do with money, but with the values you want to pass to your child. That was my motive: If, God forbid, I’m not around when he’s older, he can read this to find out who his mother was, what I loved and valued.
Home: San Francisco; Age: 40; Diagnosed: 1991; Faith: Buddhism/Hindui
I’m from Guam, where 99 percent of the population is raised Roman Catholic. My family is extremely orthodox. I went into the seminary for a few years, training to be a priest. At 21, it became apparent to me that the Franciscans and I were looking for different things: They wanted to find parish priests for the island, and I was looking for a monastic experience. It came down to whether I was going to submit to the authority of the Catholic Church or look for a true spiritual life for myself. Just as I was getting ready to take my vows, I left.
A Franciscan in Frisco
In 1982, I moved to San Francisco,where I finally gave myself permission to be a gay man -- a pronounced conflict when I was with the Franciscans. But I didn’t leave behind the spiritual life; I learned that being a Franciscan wasn’t something I put on and took off like a cleric’s robe. It was about seeing myself in a certain way. I could live in the world as a gay man and still carry inside of me the discipline of the Franciscans.
My first partner died in ’91, the same year I tested positive. The Catholic Church had lost its appeal, and I turned to the East, beginning to study Buddhism and Taoism. While it’s nice to think that Jesus Christ died for my salvation, I subscribe to the Buddhist idea that you’re responsible for your own salvation, and no one else can undo your karma. This meant telling my family that I have HIV and facing their anger. While rituals of death are integrated into Pacific Islander society, there’s also a lot of judgment about how people live, that only sinful, dirty people get HIV.
My current partner, Krandall, also comes from a religious background, lost his partner to AIDS and has HIV. It pulls us together:We love each other knowing that we’re mortal. When he put Catholicism aside, he redirected his energies to the philosophies of India. He introduced me to Siddha yoga, the spiritual practice of Vedanta, and Jungian psychotherapy.
In the evenings, I chant with Krandall,and after we pray, we meditate. We turn off the phones, close the doors and have our own puja, or worship. The chant I use is the Siddha yoga chant, "Om Namah Sivaya,“which means ”I bow to the Supreme Self." I chant all day long, quietly.That’s how I learn to see the world, through the mantra. No institution can make my spiritual life abundant; it’s how I live.
Our shrine at home contains statues of Ganesha, Siva and Laksmi.When I put these deities together, I’m bowing to all parts of myself:my intellect, the parts that wish for abundance and love, beauty and strength. My statue of Kali reminds me that there are dark experiences in the world, and that as painful as they may be, they are also a manifestation of God. My challenge is to walk through the world in all of its beauty and horror, and to stay focused on the Atman, on God, who is everything.
I’ve been on several different cocktails.I’ve had no major infections, but my immune system is vulnerable. I’ve taken a drug holiday to give my body a rest, but now I need to get back on a new combo and keep an eye on my health.
The knowledge of my mortality has allowed me to do what brings me joy. Now I paint, and Krandall and I wrote a book about our spiritual journey [What It’s All About: What We Learned About Living While Waiting to Die,Alyson Publications]. Mortality is everywhere, except not until somebody hands us the envelope and says “You have AIDS” do we fully embrace that knowledge. This awareness doesn’t free us from fear,sadness or anxiety, but we can try to transform those forces to propel us forward rather than falling back into despair. This awareness motivates us to go on living and to keep loving.