Many of us find meaning outside the worlds of religion and spirituality, but for some people living with HIV, their spirituality acts as a powerful source of inspiration and well-being.
Tami Starlight was homeless and living on the streets in Vancouver's Downtown Eastside when she says she was lifted by a "power" bigger than herself, a power that knew that she "would be ready to respond." A Cree from Peguis First Nation, Starlight believes that she was born with a spirit but says her spirituality became "atrophied" when she was homeless and addicted to heroin, cocaine and other drugs.
Her spiritual renewal began in 1995, around the same time that Starlight, a trans woman, then 30 years old, was diagnosed with HIV. It took a few years, she says, but the drugs started to lose their grip on her life and her spiritual senses gradually grew stronger. By 1998, she was off the streets and off drugs. "My spirituality became my own when I got clean," she says.
Spirituality is sometimes described as an inner life, a moral compass, how you think, feel and behave in the search for meaning. The exploration often begins with big, existential questions, as it did for Starlight: Who am I? Why am I here? How am I going to make my time here meaningful?
Many people who face a health crisis, including many people living with HIV, ask themselves such questions. For some, the answers can be found in religion. Others find meaning and purpose in the secular world -- through nature, music or art, yoga or meditation, even psychotherapy or a commitment to social justice. No matter where it comes from, spirituality is, for many, a powerful source of personal strength and well-being. As Starlight, now 48, says, "Spirituality is that place, that part of my life that gives me great comfort."
Beyond comfort, research suggests that spirituality might also be good for your health. That may be because spirituality can bring with it a healthier lifestyle, community and social support, less stress and better coping skills. Through nourishing their spirits, the people with HIV that we meet in this story connect with themselves and reach out to others. They cope with health and life challenges and draw strength to pursue their passions.
Following an hiv diagnosis, religion and spirituality can help people to examine the world from a fresh perspective and make sense of their new lives with HIV. That was certainly true for Starlight. Raised in Edmonton, she remembers going to church as a child. At 15, she left home and hitchhiked to Vancouver, where she eventually ended up on the streets for seven years. "I really lost my way and I attribute that to society," she says. She cites environmental degradation and the pursuit of money and career as examples of practices that made it difficult for her to cope. The key to finding her way back, she says, was "reconciling [herself with] a lot of what people do." That led to a process of "understanding why I had become what I had become, accepting and forgiving, living more in the now and being able to plan for the future."
Starlight's exploration to rediscover her spiritual self included returning to church. In the end, however, she found that she identified most closely with Aboriginal spirituality. For one, she says, there is "little or no dogma involved" in indigenous spirituality. "We [Aboriginal people] try to live in harmony with nature, and that's where the Creator is." Starlight says that spirituality is the "number one motivator for the things I do and how I navigate the society I live in."
The medicine wheel, or circle of life, offers a fitting metaphor for the role of spirituality in the health and well-being of people living with HIV (see "As the Wheel Turns" in the Spring/Summer 2004 issue). Its four quadrants represent the physical, the emotional, the mental and the spiritual. Aboriginal elders say that if we are out of balance, it's likely because we favour our mental and physical sides, pay too little attention to our spiritual selves and often don't know how to express and deal with our emotions.
Diane Kaiswatum, an Elder from the Piapot First Nation near Regina, Saskatchewan, and a member of the board of directors of the Aboriginal AIDS service organization All Nations Hope, has counselled people living with HIV. Gentle and soft-spoken in her approach, she believes that we all have a spiritual life, whether we call it that or not. Kaiswatum expresses her spirituality through Aboriginal ceremonies -- whether through talking circles, smudging, pipe ceremonies or cleansing rituals, she says, they help people who have "fallen off balance" get back on track.
Her role as an Elder is to lead these ceremonies and impart her wisdom and experience to people who seek her counsel. She often recommends sweat lodges for people living with HIV: "They teach you when you get up in the morning, even before you put your feet on the floor, to give thanks for the day." She believes that prayer and ceremony are particularly important for people with HIV because they provide comfort. No matter what we're going through, she says, "we can't be without prayer. We're never to say that we don't have anything, even at the lowest point in life. When you have prayer, you have lots."
Ralph Wushke, 59, has been living with HIV since 1987. Deeply spiritual since he was a child, Wushke says that religion is his form of spirituality as well as his calling. He is the minister of Toronto's Bathurst United Church and the ecumenical chaplain at the University of Toronto. "Whether as a person who is paid to be religious or not, my week would lose its sense of anchor if I didn't go to a weekly church service and sing hymns," he says. "I need to stop once a week and let myself be filled with awe and wonder through liturgy, silence, music, prayer and community."
Raised on a farm in rural Saskatchewan, Wushke came to be more religious than his family. He says it's hard to separate his spirituality from his homosexuality. "As an adolescent and closeted homosexual, I realized that religion and the church would be my way of making it in the world," he says. "I saw it as a way to have a life as a gay person." At the same time, his experience of religion is influenced by his homosexuality. "I'm religious because I'm gay but I'm also gay in a religious way. For example, love-making, sexuality, going to gay bars -- I experience them all on a religious level." In a gay bar, he feels a sense of community and a level of acceptance that he also finds in religion.
In 1995, Wushke was diagnosed with AIDS and went on long-term permanent disability. He describes his religious life as his "single greatest source of comfort" as he prepared for death, planned his funeral and wrote his will. Antiretroviral therapy then saved his life, but religion is what grounded him and gave his life meaning.
The elements of ritual and community, inherent in Aboriginal culture, are also aspects of many organized religions. Wushke points out that Judaism, Hinduism, Buddhism, Islam and Christianity all involve religious observances, laws and practices, including singing and gathering with a congregation. In our modern, increasingly secular society, he asks, "Why would people get together and sing those odd songs poorly for an hour every week? In fact, that's still the way most of the world lives." The answer, he says, is that there's something very important about such practices. "They give you the opportunity to create social justice -- along with the community, with the coffee, with the music, with the prayer. It's a holistic experience."
In a healthy religious community, Wushke says, you receive lots of emotional support. "Just at the level of managing your week-to-week crises, big or little, if you're going to church, on Sunday morning there will be someone to listen to you," he says. "It's their duty to listen and care. If you don't have that, you may be sitting alone with your problems. Community could be good for you."
Spiritual meaning does not always take the form of religion or communal worship, however. It can also be more of a secular and independent experience. For Gordon W., a man in his early 60s living in Vancouver, his spiritual path started when he was introduced to mindfulness meditation. That was during a period he calls "The Dark Ages." After his partner of 12 years was diagnosed with AIDS, Gordon's life was in a state of turmoil. "On top of my own HIV diagnosis," he says, "I was trying to help manage his disease and comfort him, while dealing with my own feelings of worry, fear, anger and grief." His partner died in 1990 and two close friends also died of AIDS not long afterwards. Gordon needed something to help him cope.
That's when he took off to Asia and discovered mindfulness meditation. Mindfulness meditation is based on Buddhist philosophy, but is not a religion, Gordon explains -- it's more a philosophy of living. And it's open to everyone, regardless of their beliefs. His daily practice has taught him to notice his thoughts, feelings, actions and reactions. As a result, he no longer gets swept away by them or becomes disabled by them. "Mindfulness meditation teaches me to calm the mind and find a nurturing, safe and peaceful place."
As a person living with HIV, Gordon describes how mindfulness meditation has helped him profoundly, not only spiritually but emotionally and physically too: "You gain consciousness and understanding on a subtle level of what's happening in your body -- everything from your muscle mass to your libido to your emotions -- and what will help you." Passionate about the benefits of his spiritual practice, he says, "Mindfulness has given my mind, body and spirit the ideal environment in which to function."
Researchers, too, have noted the health-promoting effects of what we call spirituality. Numerous studies have linked religion and spirituality to an improved ability to cope with a range of illnesses and stressful situations, having more of a sense of purpose, as well as a greater sense of overall well-being. Some even suggest a correlation between being spiritual or religious and improved immune function.
In addition to providing comfort, inspiration and a sense of well-being, Gordon's Buddhist-inspired spirituality, Ralph's religious faith and Starlight's Aboriginal spirituality have led all three to reach out to others. Gordon now teaches Thai yoga massage, a wellness-promoting technique that combines moving, stretching and relaxation, and delivers workshops to both HIV-positive and HIV-negative people.
Beyond his work as a minister and university chaplain, Wushke is an unwavering advocate of environmental causes, world peace and social justice. He believes that one of his most important contributions to his community is as a chaplain counselling queer students, including those who are transgendered or two-spirited or new to Canada from parts of the world where it is a crime to be gay.
Starlight has similarly devoted her life to advocating for social justice and societal change. She is a community organizer for numerous causes, including equality for transgendered people. Closer to home, she is an active member of the Downtown Eastside Neighbourhood Council, which advocates in the interest of residents. Her -spirituality has helped her connect with people in a more meaningful way, she says. And connecting with people, as well as seeking equality and justice on their behalf, has become an expression of her spirituality: "My spirit compels me to get involved."
Judy Pike is an award-winning freelance writer and editor in Toronto, with a special interest in issues affecting people living with HIV.