POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS

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

Thebody reduced   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.

 

When the Crisis Lasts a Lifetime: HIV, Burnout, and Emotional Survival

Living with HIV creates one stressful event after another: anxiety about getting tested, dealing with news that one is positive, when to start medications, dealing with anxiety, depression and stigma…The list is endless.  It is critical that we learn how to manage these feelings because the toll created by chronic stress is directly related to a drop in CD4 counts.

At the recent Positive Living 15 conference in Fort Walton Beach, I gave this presentation on some ways to cope.  Here is a pdf verson of my presentation:

Download Positive Living 2012

The slides explain how stress impacts the body, symptoms, and tools to address them, including gaining a sense of optimism, improving interpersonal skills, identifying and appropriately expressing feelings, and most important, getting connected to others with whom you can give and receive support.  

Emotional survival with HIV is certainly possible but doesn't come without work, commitment, and sharing the experience with others.

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

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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.

David Fawcett Receives Who’s Who in Florida Prevention Award

David Fawcett PhD, LCSW, has been honored with the "Who's Who in Florida Prevention Award" in recognition of his leadership in both substance abuse and HIV/AIDS prevention.   The Florida Office of Drug Control named individuals recognized for their leadership at the annual statewide Prevention in Florida Conference in Orlando in early October.  This award acknowledges the accomplishments and dedication of individuals and groups within Florida’s prevention community.  Dr. Fawcett's nomination specifically recognized a decade of leadership working to strengthen individuals and families, especially within the LGBT community.

Dr. Fawcett has worked on a number of community projects, including serving as Chair of the South Florida Methamphetamine Task Force, which fostered community partnerships to address the methamphetamine crisis through training of professionals and creation of an infrastructure for prevention and treatment.  He was a founder of Meth and Men South Florida, a program of Sunserve, which continues to provide sliding-scale individual and group therapy for substance abuse within the LGBT community.  He also serves on the Board of Governors of the Broward County Commission on Substance Abuse; the Clinical Advisory Board of Sunserve; and recently was Program Co-Chair of the 2010 National Gay Men's Health Summit, a five-day event that drew nearly 500 people from around the nation to address concerns related to the health and wellness of gay men. 

Dr. Fawcett frequently makes presentations on topics of HIV and substance abuse both locally and nationally, most recently at the US Conference on AIDS.  He has been in private practice and created and now facilitates the "Connections" group for gay men at Fusion, a drop-in center funded by the Broward County Health Department.  The weekly "Connections" group is open to all and provides a rare opportunity for gay men to discuss a variety of topics, including body image, self-esteem, intimacy, relationship skills, stress reduction, and many more.  

NATIONAL GAY MEN’S HEALTH SUMMIT TO BE HELD IN FORT LAUDERDALE AUGUST 25 – 29

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Hundreds of gay men and their allies from throughout the country and beyond will gather on August 25 – 29, 2010, at the Sheraton Fort Lauderdale Airport and Cruise Port Hotel to participate in the 2010 National Gay Men’s Health Summit. The theme of the event is  “Creating a Brighter Future: The Next Decade of Gay Men’s Health” and will be held jointly with the 9th annual Southeast Regional Gay Men’s Health Summit.   Over 250 gay men (as well as, bi, trans men, other men who have sex with men and their allies) will gather to reflect on and celebrate gay men’s lives while working on a brighter future for gay men’s health and wellness.

The summit is open to all and registration has been underwritten for residents of Dade, Broward, and Palm Beach Counties by the Broward County Health Department and the Florida Department of Health.   Pre-summit workshops begin on Wednesday, August 25, and include a panel featuring an intergenerational dialog around gay youth, adults, elders and ancestors; another focusing on body image and weight issues; and a gay men’s leadership institute.

The formal summit begins on Thursday, August 26, and concludes on Sunday, August 29, and features a number of plenary speakers and nearly 70 workshops on topics as diverse as addictions, mental health, HIV, wellness, dating and relationships, and spirituality.  Many of the workshops will address special topics and populations, such as HIV negative youth of color, building community among Hispanic gay men, return to work issues for those on disability, and addictions recovery.  The summit is designed to promote social interaction and fun.  A significant number of the workshops are experiential, such as laughter yoga or meditation, and are intended to be edgy, such as the impact of GRINDR on our community and the use of social media to improve gay health and wellness.  Besides casual interaction with gay men from around the country (and beyond), there will organized social events such as a show and a pool party.

The gay men’s health movement grew from an interest in expanding the scope of gay men’s health beyond (but certainly including) HIV to a full range of other issues that impact our health and wellness.  At the Summit, gay men and their allies will have frank and open dialogue about race, racism, identity and gender politics, aging and class. We will discuss these and other domains and paradigms for thinking about gay men’s health. Our conversations will cover the broad spectrum of interests for gay men with key focus on strengths-based organizing, emerging issues, and other hot topics.
One of the key challenges facing gay men is to ensure that we continue to be involved in the strategizing and implementation phases of Health Care Reform. Another key challenge is to develop creative funding strategies and work alongside key policy makers while we simultaneously work with fellow advocates to shape policy such as ADAP and the National HIV/AIDS Strategy.

Walk-up registration is available beginning at 10:00am on Wednesday, August 25.

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).

Gay superhero

    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

MAY 15 ABSTRACT DEADLINE APPROACHES FOR NATIONAL GAY MEN’S HEALTH SUMMIT

Summit

The deadline to submit abstracts for the 2010 National Gay Men’s Health Summit is fast approaching.  See details below.  For more information or to submit your proposal visit www.gmhs2010.com

NATIONAL GAY MEN’S HEALTH SUMMIT 2010

Creating a Brighter Future:

The Next Decade of Gay Men’s Health

August 25-30, 2010

Fort Lauderdale, Florida

Press Release:

The 6th National Gay Men’s Health Summit will gather together gay men (as well as, bi, trans men, other men who have sex with men and their allies) to reflect on and celebrate gay men’s lives while working on a brighter future for gay men’s health and wellness.

In sunny Ft. Lauderdale, Florida hundreds of gay men and their allies from throughout the country and beyond will gather August 25 – 29, 2010, and convene at Sheraton Ft Lauderdale Airport and Cruise Port Hotel to share space together and engage about their exciting work and their lives while they attend the 2010 National Gay Men’s Health Summit. The theme of the event is  “Creating a Brighter Future: The Next Decade of Gay Men’s Health” and will be held jointly with the 9th annual Southeast Regional Gay Men’s Health Summit.

Gay men are creative, strong, and resilient. We have developed our own home-grown social networks, support structures, definitions of community, communities and communal rituals, formulated systems and structures for and around health and wellness- all for and by us.

Gay men continue to create, build and sustain lives that are satisfying and fulfilling, even in the face of formidable obstacles, persistent stigma, and incredible challenges. One of the key challenges we face is to ensure that gay men and their allies continue to be involved in the strategizing and implementation phases of Health Care Reform- our voice will be heard. Another key challenge is to develop creative funding strategies and work alongside key policy makers while we simultaneously work with fellow advocates to shape policy such as ADAP and the National HIV/AIDS Strategy. Gay men face the challenge to fully explore and develop solutions to decrease health and wellness disparities.

At the Summit, gay men and their allies will continue to have frank and open dialogue about race, racism, identity and gender politics, aging and class. We will discuss these and other domains and paradigms for thinking about gay men’s health. Our conversations will cover the broad spectrum of interests for gay men with key focus on strengths-based organizing, emerging issues, and other key hot topics. Gay-identified Trans men will certainly be a key area of dialogue with a focus on discovering, dreaming and agenda setting for gay transmen. We will also broach an intergenerational conversation around youth, adults, elders and ancestors, and the impact of a loss of a large part of a generation as a result of the AIDS epidemic with discussion of how to move forward together. We will look into an expansive research agenda to ensure a holistic approach that is also culturally responsive and appropriate toward gay men and their health and wellness.

We will explore our individual, collective and inter and intrapersonal sexual health through interactive workshops, laughter, and play- a journey of past, present, and future.  We will review and use the Gay Men’s Health Agenda to guide national efforts around political action and local organizing and rallying. The Gay Men’s Health Agenda will seat its first National Steering Committee in collaboration with its Leadership Core. We will continue to think outside the box, challenging and expanding social categories and promoting culturally appropriate and responsive directives with novel programmatic approaches.

 

Living Longer by Living With Purpose

    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.

Volunteering Can Make You Healthy and Happy

    Volunteering

Did you know that giving your time and effort on behalf of someone else can actually improve your mood and overall health?  Although it sounds too good to be true, that is the conclusion of a number of studies on a variety of populations from around the world.  Scientists are still unraveling the specifics, but there are some intriguing clues documenting the health benefits of volunteering.

    First, there are positive physical health effects.  Volunteering was associated with reduced mortality risk in a number of studies, especially in persons aged 60 and over, although the benefits appear to hold true for all ages.    Simply put, persons who consistently give their time on behalf of others lived longer than those who did not.  More surprisingly, the health status of the volunteer didn’t matter.  Even if they had a serious medical condition themselves, volunteering provided a protective factor for their own physical wellbeing.

     Volunteering was also associated with increased positive emotions and a significantly-improved  sense of purpose.   It increased access to social and psychological resources which countered negative moods such as depression and anxiety.  People who volunteered reported a greater degree of overall happiness, with improved social support and cohesion that benefits both the individual and the community.  Finally, volunteering has been shown to improve self-satisfaction and mastery of new skills, both of which reinforce a positive self-image.

    These studies also reveal interesting ways to maximize the positive effects of service work.  The total number of volunteer hours per week was not as important as consistency and length of service.  That is, just one hour a week was more effective at promoting the health and wellness of the volunteer than lots of hours, as long as it was consistent over a period of months or even years.    Studies also revealed that there are health benefits even if the service work is informal and privately arranged, such as spending time with a homebound neighbor each week.  Volunteer work doesn’t have to be “official” to benefit, just consistent.

    In the end, these studies showed that “mattering” was the crucial link between volunteering and wellbeing.  By moving beyond our own needs and helping others, we begin to make a difference and “matter” to both our community and ourselves, and we get the bonus of being healthier and happier.

David Fawcett, PhD, LCSW   

This article first appeared in Out in the News, Volume 3, Issue 1 (February-March 2010), a publication of the Broward County Health Department, S-Men Campaign for a Safer, Healthier Community.

A Different Longtime Companion: Reflections on World AIDS Day 2009

 David Fawcett, PhD, LCSWRed_ribbon


It was 1982 when my friend Andrew developed an odd pneumonia that put him in the hospital and ran through his body with such ferocity that he was dead in three days.  My friends and I were stunned, until it soon happened again – this time with another acquaintance who survived longer, but ultimately succumbed to an illness the New York Times called “GRID,” gay-related immune deficiency.  GRID soon became AIDS, and one by one almost all of my friends became sick.

Thus began a journey that continues to this day, first marked by terror, then sadness, then overwhelming grief, and then by sheer determination as we stepped up to care for each other.  My life as a thirty-something gay men in New York was quickly transformed from exuberance in the aftermath of Stonewall to determination marked by caretaking and political advocacy. 

The energy on streets in the Village and the Upper West Side, once both high-spirited and sexually charged, became heavy with sadness.   Many men simply disappeared as the disease confined them to their homes, or their friend’s homes, or hospital wards.  Many died.  Others were out using the patchwork of services that began to develop in response to the crisis.  The streets were filled with the odd sight of thin men with wide terrified eyes walking awkwardly with canes.   I vividly recall one very cold winter day when I helped one frail young man struggle across Seventh Avenue through slippery frozen slush on his way to St. Vincent’s.

Despite persistent optimism and a strong sense of spirituality, for me the eighties became a human tragedy.  My life was entwined with AIDS at every level: intimate, social, and community.  As we lost one friend after another there was nothing to do but go forward, caring for those who were dealing not only with physical illness but also struggling with the emotional pain of rejection and stigma.  And AIDS kept coming.

One price we paid, among many, was never really stopping to grieve because so much needed to be done.  We hardened our emotions and our resolve – there was simply too much to do.    Men of my generation live with a great wound that, for many, remains unacknowledged and unexpressed.  We need to heal, even in the face of the ongoing epidemic.

Now, nearly thirty years later, AIDS continues to create suffering.   For many, it has lost its urgency.  A new generation has grown up with the disease and new medications, and view it as a manageable illness, but it is relentless and continues to demolish lives.  Long term survivors have developed an acceptance of the unknown.  They have given their bodies to drug trials and dealt with multiple losses, either through the death of partners and friends, or alienation from family.  Ironically, they now face a new wave of heart, liver and kidney disease as a result of the medications that have kept them alive. 

We need to remain vigilant about AIDS.  We need to advocate for new treatment alternatives like rectal microbicides and redesigned prevention efforts.  We need to remain informed and fight complacency.  We need to end the stigma that surrounds AIDS to this day, undermining both prevention and treatment.  Mostly, on this World AIDS Day, we need to remember the pain, the lessons, the courage, and the successes of the past and use them to renew and reenergize our continued work to end AIDS once and for all.