David Fawcett

POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS

Gulf of Mexico at Fort Walton Beach, Florida, site of the Positive Living Conference

   This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"

 

Several attendees drove fifteen hours from St. Louis.  Others came by caravan from Atlanta.  In the hotel lobby there were happy reunions of friends who hadn't seen each other since last year.  Overall nearly four hundred and fifty people made their way from 22 states to the white sandy beaches of the Florida panhandle in early March.    It was spring break, but their purpose was much more a matter of life and death.  They were gathering for Positive Living 15, the largest conference in the nation specifically for people living with HIV.

For fifteen years Butch McKay and his small staff at OASIS, the Okaloosa AIDS Support and Information Services, have somehow patched together a variety of funding to create a world-class conference where nationally-known figures share information and support with hundreds of persons living with the virus.  A generous scholarship program underwrites the hotels and meals for most who otherwise would be unable to attend.  Many have no other access to workshops where state of the art information as well as life-saving skills are shared in an atmosphere saturated with both laughter and heart.  

The information provided is first rate.  Martin Delaney, a prominent activist and founder of Project Inform, attended every Positive Living conference until his death.  Other well-known figures continue to lead workshops and deliver keynote addresses.  NMAC, the National Minority AIDS Council, provided support for an update on the 19th CROI (Conference on Retroviruses and Opportunistic Infections) which occurred just days before in Seattle.  Additionally, the North Florida SHARP (State Healthcare Access Research Project) report was unveiled.  This document, a project of the Harvard Law School and the Treatment Access Expansion Project, was one of several that have assembled critical data concerning states' capacities to meet the healthcare needs of people living with HIV.  An annual Activate U Advocacy Academy provided invaluable training on basic advocacy skills and encouraged attendees to make their voice heard.

The workshops were informative, interactive and fun.  Topics ranged from housing to ADAP, intimacy to trauma, and faith-based prevention to laughter therapy.  There were groups for woman, transgendered, and men who have sex with men.  In my own workshop about managing the effects of living with the virus year after year ("When the Crisis Lasts a Lifetime: HIV, Burnout, and Emotional Survival"), the attendees were hungry for information about both the physiological and emotional effects of stress and trauma as well as for solutions and skills to manage that stress.

The real magic of Positive Living doesn't happen in the breakout rooms, however, it takes place in the person-to-person connections made throughout the weekend.  It could be felt in the moving heart-circle on the beach in memory of those who are no longer here, or at the dance where everyone loosened up to rhythms and moved their bodies among somewhat surreal remote-controlled, large-scale inflatable fish.  Most of all, it was evident in the casual socializing where, perhaps for the first time, attendees could relax in a space where everyone they encountered was either living with HIV/AIDS or was an advocate and understood how it feels to survive and thrive with the virus.  

It is this universal acceptance that was truly profound.  Even after thirty years, HIV carries enormous stigma.  The majority of people attending this conference come from the south, many from rural areas where they survive in relative isolation.    Some typically drive one hundred miles to access care, many have been irreparably separated from their families, and each one lives with the burden of social stigma and isolation.  It was a gift to witness the magic of people moving from isolation to connection with others living with HIV.  It was a respite, at least temporarily, to the isolation imposed by AIDS.  When stigma and barriers of serostatus are neutralized, a playfulness emerges.  Strangers feel, and indeed are, connected in profound ways.  People make eye contact, say hello, and smile spontaneously.  There is a conscious acceptance that we are all on this journey together.

The Positive Living conference is a powerful reminder that living with the HIV virus requires much more than medication access, adherence or good medical management.  People living with the virus need information, skills, and social support.    As professionals, we must recognize that the spirit of our patients also needs to be nurtured, because it retains the hurt and shame and fear that accompanies HIV.    

This conference is one of the few places where a large group of individuals can get together and connect at the level of the heart.  It is every bit as essential as daily medications.
It is troubling that every year this conference becomes more difficult to organize.  Dollars are increasingly scarce and the constituents of Positive Living, diverse both in terms of race and sexual orientation, have traditionally been marginalized.   We need to protect this conference and any others that directly serve people living with the virus.  They are unique events that provide skills as well as emotional and spiritual nourishment to a starving population.   It is, or course, necessary to quickly disseminate scientific knowledge but let's not forget the most important constituency in this fight - people living with HIV/AIDS.

 

The Endangered Wonder of the Positive Living Conference, and Why It Matters for Our Patients

Every spring, on the white, sandy beaches of the Florida Panhandle, an unlikely gathering takes place. On that narrow strip of land, between the Gulf of Mexico and Choctawhatchee Bay, 450 HIV-positive men and women from around the country, but mostly from the Southeast, come together amidst occasional spring breakers for a weekend of socializing, education, some silliness, a few tears, and just plain fun.

This year, the Positive Living conference turned 14, an extraordinary success by any measure, but even more poignant because it is the only remaining large-scale conference for persons living with HIV. It is a remarkable blend of individuals: Those who are well-known for their work in the field mix easily with positive men and women who may never have seen the ocean, or been able to spend a weekend by themselves at a hotel, or (most certainly) been around so many other positive individuals in one place.

I am always struck by the rich amount of valuable information available for both attendees and presenters. Tom Liberti, Florida's HIV/AIDS Bureau Chief, gives an annual review on the state of affairs, especially poignant this year because of the AIDS Drug Assistance Program crisis. There are medication updates and workshops on mental, physical and spiritual health. There is a daylong AdvocacyU workshop, where attendees learn how to use their voices to advocate on their own behalf.

And there is history. Until his death, Martin Delaney never missed Positive Living. And this year, as Martin Delaney did in years past, Paul Kawata, the executive director of National Minority AIDS Council, gave a keynote that captured a long-term view of HIV -- where we have been, our successes, our setbacks, our power, and the many struggles to come.

 

The heart of the conference lies with the participants, and it is here that the immense benefit for one's clients living with HIV can be clearly seen. Most receive scholarships, which pay for the beachfront hotel rooms and meals. Many are from the rural South and simply don't have adequate access to medical resources -- or, for that matter, each other. Positive Living fosters the formation of networks for both medical and social support; but mostly, at least for a few days, it normalizes the stigma of living with HIV. For one brief weekend, everyone is HIV positive (or a very close ally). One can feel a sense of joy and freedom in sharing this physical and emotional space.

The very existence of this conference is a tribute to the vision and hard work of Butch McKay, the executive director of a relatively tiny agency, Okaloosa AIDS Support and Informational Services, Inc. McKay and a handful of staff raise the necessary funds and organize this event with a mastery and focus that have a sense of life or death. And there is no doubt that Positive Living enhances, and even saves, the lives of persons living with HIV.

But the conference itself, like others before it, is at risk. Every year, fundraising is more difficult even as the need grows. Across many states vital programs are being cut, individuals are struggling with fewer resources, and bureaucratic shifts resulting from budget cuts make maneuvering the system, and surviving, that much harder. We witness our clients struggling with these issues every day.

It's easy to see why such events have disappeared. They require extraordinary determination to bring them to life, and the costs are daunting. But their demise represents one more great loss attributable to this virus. Without such gatherings, persons living with HIV have one less resource by which they can remain educated, connected, empowered and even sustained.

Too often we allow ourselves to focus on the objective data of HIV: CD4 counts, viral loads and years since diagnosis. Events such as Positive Living heal at a deeper, more subjective level: the spirit. They renew our determination as providers and they reenergize our clients' ability to integrate healing at multiple levels. For all this and more, they are well worth fighting for.

Finding Your [Spandex-Free] Inner Hero

Several times a year at New York’s Stonewall Inn (yes, that Stonewall) a number of gay superheroes (well, gay men wearing spandex and fabric superhero costumes) gather together to discover their extraordinary powers.   There are plenty of X-Men and Transformers and even a hunky Superboy or two.   This is “Skin Tight USA,” a gay costume-fetish party that can attract several hundred masked, caped, and otherwise heroically-adorned men (photo by Casey Kelbaugh of The New York Times).

    It’s great fun, but gay men don’t need to invest in spandex to be heroes – that potential is in every one of us.  Most people think that heroism is a characteristic that one either has or does not (and most of us think we don’t).  Others suspect that heroic behavior is related to some genetic trait, probably inherited by someone else.  Each of us, however, easily has the potential to be a hero because, simply put, heroism is a decision that we make within ourselves to figure out who we really are, how we fit into the world, and then act accordingly.

There are three qualities necessary for heroism, and all involve “other oriented behavior:”

o    Empathy:  relating to someone in such a way that you see similarities between their feelings and needs and your own;                                       

o    Compassion: adding understanding to empathy, and wishing to alleviate another’s discomfort or pain; and

o    Kindness:  being considerate and helpful

 

    We don’t have to lift an automobile off a struck pedestrian or discover a cure for AIDS to be a hero.   Patricia Omoqui, a trainer and coach, wrote that the potential to be heroes lies within all of us if we act from our hearts, see the need of the moment, and step forward.    There are heroes all around us.  Are you one of them? 

David Fawcett, PhD, LCSW

Living Longer by Living With Purpose

    Some years ago a friend of mine sold his successful veterinary practice in the midwest, bought a van, and headed to California to pursue his lifelong dream of writing music.  People no doubt thought he had lost his mind, or at least regressed from being a responsible adult to a frivolous adolescent searching for himself.   Years later, he has had some success with his music, but most of all, he has experienced the thrilling notion that he followed his heart.

    Not all of us, of course, have the opportunity to drop out of our lives and begin anew, but we all certainly have the chance to discover what gives our life meaning and follow it to our best ability.  The daily satisfaction is enormous, and so are the health benefits.  A study at Rush University Medical Center in Chicago found that people who followed their life’s purpose were only about half as likely to die over the follow-up period as compared to people who expressed less sense of purpose.   These findings have been replicated in other studies: following your dreams is a protective factor for your health.

For many of us, identifying our personal mission, goals, and objectives is not an easy task.  There are many helpful resources, one of which is Martha Beck’s Finding Your Own North Star.  She outlines several steps that are useful in identifying and following through on living your dreams.

    The first step is articulating what is important to you.  Many experts recommend sitting down without distraction and writing freely about questions such as what makes you smile; what activities cause you to lose track of time; what do people ask you for help with; or what would you regret not fully doing, being, or having in your life.    It will take time and numerous lists before a convergence of themes appears, but it will.  These are your core desires.

    Once you have a notion of your own purpose, it’s important to compare it to how you live your life.   Many of us have unconscious beliefs about ourselves that hold us back – these need to be identified and repaired.  For example, a client of mine had a childhood learning disability that affected his performance in school   He not only had trouble studying, he also believed (and was told) that he wasn’t as smart as others and would never be able to succeed in school.   As an adult he wanted to become a nurse, which required college courses in biology and chemistry.  He took a chance and enrolled, asked for help where he needed it to overcome his learning problems and develop good study habits, and became an “A” student.  He realized his core belief about his intelligence and learning was wrong.

    A second critical step is to compare what life offers you with your own mission and objectives.  The opportunities we accept must align with our goals.  Without the guidance of our life’s purpose in making choices about which to pursue and which to let go, we can become frustrated, disillusioned, or simply burn out. 

    With practice it becomes increasingly easy to know when we our activities resonate with our life’s purpose.  Nurturing our intuition can be a corrective force when we temporarily get off track from the real source of satisfaction and health: cultivating and living our dreams.

David Fawcett, PhD, LCSW

This article first appeared in Out in the News, Volume 3, Issue 21 (April-May 2010), a publication of the Broward County Health Department, S-Men Campaign for a Safer, Healthier Community.