The Early Years Part Five: The Power of Community
by Shanti Shanti Khalsa, PhD, C-IAYT, Guru Ram Das Center for Medicine & Humanology Founder
In the mid-1980’s the Los Angeles County HIV/AIDS community was close knit, holding one another, sustaining one another, amid a health crisis that left hundreds dead each month.
For nearly 15 years – let’s pause a moment to take that in – nearly 15 years — there was neither effective medical treatment nor cure for what we now call HIV disease. Community was the healer, sustainer, and the heart of hope and meaning between 1981 when the first AIDS case was reported, and 1996 when HAART became standard medical treatment.
In this issue I share with you some of the key people, community services, and gathering places that kept us together through the worst of it.
The HIV/AIDS community defined themselves not as AIDS victims, sufferers, or patients, as the media and medical system had. Instead, they described themselves as PWA (People With AIDS), and later, to affirm their own right to be, as PLWA (People Living With AIDS)
Community in Action
We gathered weekly for The Hayride at Fiesta Hall, Plummer Park in West Hollywood. Led by Louise Hay, typically 800 people came together to support, sing, share, and uplift one another. Louise invited me every 6 weeks to lead a 30-minute Immune Fitness® session.
Being Alive, was the first AIDS service organization in Los Angeles founded by and for people living with AIDS. Established in 1986 by four friends, John Mohr, Ron Rose, Rick Ewing, and Scott Barry, Being Alive offers a comprehensive set of peer-based social services aimed at shifting the focus from illness and death to living a full life.
For nine years, Being Alive sponsored Mark Katz, MD to present a monthly in person medical update. Before the internet, before search engines, this is how we got access to information of both medical and non-pharmaceutical methods that could save lives.
Being Alive provided space for Immune Fitness® classes. And they hosted great parties.
Martin Delaney was a prominent San Francisco-based HIV/AIDS treatment activist and the founder of Project Inform. He provided timely treatment information and education to PLWA and doctors worldwide. Along with Michael Callen and others, he made significant impact as a public policy advocate, contributing to the development of some of the first effective treatments for HIV opportunistic infections.
To bring an urgent awareness of the need for such action, participants in the Immune Fitness® classes chained themselves to fences outside federal buildings, marched, protested, raised hell.
At the next class that followed each protest, we celebrated their successes.
Those of us who were showing results with whatever it was we were offering pulled together an informal collaboration called Search Alliance, pioneering community-based testing of alternative therapies and experimental off-label drugs in response to the epidemic. The Immune Fitness® program was an early participant.
Pacific Center for AIDS Counselling and Therapy provided free counselling to PLWAs. I logged hundreds of hours with PACT as I met requirements to earn my counseling license. PACT was partially funded by The Elizabeth Taylor AIDS Foundation established to support non-medical direct-service initiatives for people living with HIV. Elizabeth herself showed up at fund raising events in support of PACT.
L.A. Shanti, founded in 1983, trained dedicated volunteers to provide support to those affected by HIV/AIDS. They held social gatherings, peer support, and educational events. They hosted Immune Fitness® events every few months.
Project Angel Food, founded by Marianne Williamson, focused on providing meals for homebound people with AIDS.
Cassandra Christensen, RN, with the help of Marianne Williamson, founded Project Nightlight, through which they trained thousands of volunteers to provide emotional support during the night in the homes and hospital rooms of those with AIDS.
Sandy Scott from the Church of Religious Science in West Hollywood, founded Love in Action, a volunteer peer support and service initiative led by church members. She provided space for Immune Fitness® classes.
Lisa Walford, a Hatha teacher in Santa Monica, was the only other yoga teacher in all of LA County that I knew taught people with HIV. We shared with one another what we found helpful in managing a class of people who were quite ill.
One day a student arrived with a book, Getting Well Again, by Carl Simonton, MD. The book describes a pathway to health recovery for those with cancer. He emphasizes the importance of enjoying life even when experiencing a chronic or life challenging illness, and the value of friendship and support.
Carl led a residential program a few miles away, so I reached out and ended up working with him for over 7 years.
He gave me language to express what was unfolding in therapeutic yoga and a way to bridge ancient practices with modern science.
The Immune Fitness® program fostered community among the participants and their friends and family. Each Immune Fitness® participant was encouraged to invite those who supported them in getting and staying well. Sometimes the support people in class outnumbered the PWLAs!
Most importantly, PLWAs supported one another. This is the true source of healing in community. They knew what was needed, and loved one another in practical and deeply meaningful ways. They helped each other stay sober, shopped, cooked, cleaned house, sat at bedsides, planned funerals and memorials.
Through their actions, I witnessed love in greater measure than the loss.
Louise, Marianne, Sandy, and the women from PACT and Search Alliance formed our own support group. We would see one another in hospital corridors, at Celebrations of Life, and at vigils at City of Angels Hospice or at the Chris Brownlie AIDS Hospice; monthly for lunch, and occasionally a movie.
Therapeutic Kundalini Yoga Teaching Tip #9
When teaching therapeutic Kundalini Yoga, it is helpful to create community for yourself as well as for your students. We need to be around healthy, hopeful people when we are serving those recovering from illness.
I have no photos of those years. Why? Because it was not safe for a PLWA to be identified, even if they showed no symptoms. They could and did lose their job, were evicted from their home, shunned by friends and family. Refused service by their barber, grocer, dentist.
Then a major medical advance occurred in 1995, when the FDA approved a protease inhibitor for the first time. This is an antiretroviral drug that slows HIV progression by blocking the replication of the virus. Doctors began prescribing protease inhibitors in combination with other drugs. This treatment, called highly active antiretroviral therapy (HAART), based on research led by David Ho, MD, transformed HIV/AIDS from a fatal infection into a manageable, chronic condition. U.S. AIDS deaths in the late 1990s registered a historic drop.
As the number of new infections and the number of PLWAs plummeted, the Immune Fitness® program turned our attention to developing unique, specific yogic protocols for those living with other viral or immune system conditions including cancer, myalgic encephalomyelitis (chronic fatigue syndrome), Epstein-Barr virus, and post viral syndrome fatigue.
By 1995, Search Alliance became more medically focused, and centralized its operations away from community. It is now the AIDS Research Alliance of America.
AIDS Project Los Angeles became APLA Health Services.
AIDS Hospice Foundation became AIDS Healthcare Foundation.
Project Night Light closed in 1997.
L.A. Shanti closed in 2006.
Louise moved to San Diego and passed the Hayride leadership to Stuart Altschuler. The support group continued until 2009.
Project Angel Food, continues to prepare and deliver healthy meals to those impacted by serious illness.
Being Alive is going strong. Mark Katz, MD, now into his 70’s, is practicing internal medicine in Los Angeles.
And I am still in communication with 2 of the original Immune Fitness® participants from 1986. How great is that?
Our next issue takes us into the second decade, where we move Kundalini Yoga Therapy out of group and individual classes and into the world.
