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A Somatic Approach to Living with HIV/AIDS

by Cynthia Lindway
Certified Hanna Somatic Educator

Life is terminal.

Although it seems only until one's health is jeopardized, one has little sense of mortality. Most people do not understand it's how they live that determines how they can feel.

Destination Discovery, a Wellness Vacation® company, has taken on HIV+ people and PWA's (people living with AIDS) and shown tremendous results. By tremendous results, I mean the fair get to good, the good get to great, and the great to fabulous. By focusing on the eight limbs of yoga and Hanna Somatic Education as basic philosophies by which to live, Destination Discovery (often referred to as DD) travelers are able to take much of what they absorbed home. Once back in their own environment they return home feeling deeply refreshed, relaxed and self-empowered.

Taking responsibility for one's health after receiving an HIV+ diagnosis is an act of courage that requires tremendous determination. Our client's decision to take a Wellness Vacation is the step toward living somatically: learning to sense from within and, as one traveler put it, "step out of patient hood."

When we first got the idea for Wellness Vacations®, we realized that there are many HIV+ people and PWA's (people living with AIDS) who want the ease and safety of a vacation free from the hassles of a homophobic/AIDS phobic society. And there are those who want to use their vacation to learn how to lead richer lives. We design these trips to meet such varied needs. We welcome HIV+ travelers with all of our hearts and are thrilled to serve them.

Once we found our receptive population, we began offering unique travel opportunities for HIV+ people. The travel concerns of HIV+ individuals-- security, safe water and food, and available medical attention are addressed by the staff we have compiled from our talent pool for each vacation. The compromised immune system presents a host of issues most people never have to consider. Even healthy people get sick quite often while traveling for the same reasons people with HIV/ AIDS get sick. Whether or not you get sick depends on your body's ability to fend off whatever unwelcome pathogens and microbes you ingest. As for our clients there is no margin for error. Food preparation invloves finding organic produce whenever possible and washing vegeatbles with extra steps to achieve utmost cleanliness.

We continuously fine tune the program by reading evaluations carefully. I felt bad as one group enjoyed the program so much they didn't want to complain about the food, and we didn't receive their feedback until after they had returned home. It turned out that traditional vegetarian retreat food didn't meet their needs. Many of them are afraid to eat raw vegetables and are also lactose intolerant. Therefore, the salad bar and casseroles at this particular retreat center didn't work. The next time out we hired a private caterer. We found that having our own chef allows more community to form and more fellowship to come forth as each meal is a ritual prepared with love and served with pride. Food is so nurturing that we will use our own caterer whenever possible.

What I have learned from working with the terminally ill is that time is precious. It's what we choose to do with our twenty-four hours each day that reveals our priorities. "I don't have time." translates to "it's not a priority." when it comes to the realm of wellness. Not having time for a Wellness Vacation is a peculiar situation for the "well" person or more accurately, the person who has not had any kind of a "wake up call" from their doctor or who is not yet in chronic pain. A Wellness Vacation can be such potent preventive medicine. Someday I hope we will serve all kinds of populations on these inward journeys.

Breath, present time, love and compassion. With only four main things to remember, the rest is commentary. Wellness Vacations unravel emotions for everyone involved. By the time the week is over, no one would ever recognize the group that arrived only seven days earlier. Canes have dropped, postures have changed, pain medication is no longer needed, and travelers are self-empowered as a result.

Most HIV+ people who reach out to us want to work very hard at taking responsibility for how they feel. In spite of the lack of hope they receive, they are trusting, loving and open. The key to the success of these vacations is the acceptance and unconditional love that are given and returned.

In the planning stages of these vacations, most potential travelers form a relationship with either me or with my business partner, Page Wight. Once the relationship is formed, they aren't interested in talking to the other co-founder. The vacationer's issues begin to come to the surface after several telephone conversations. Safety is the key. Does anyone else have Kaposi's sarcoma lesions? Will it be safe to take my shirt off at the beach or pool? Can I always be near a bathroom? Is there any way I can get eight small meals a day? I am hungry but can't eat much at one sitting. Is there any way for me to have ice cream and junk food as I am wasting away? Can you find me an IV pole? Will you accept a visually impaired traveler? Sometimes we set down our telephones and our eyes well up with tears and we wonder out loud what in the world we're doing this for. Then we watch our videos or look at the group photos and remember exactly why.

My business partner Page usually travels ahead of the group to ensure everything at the destination is perfect. I (with the help of a facilitator or two) meet the travelers at an airport hotel and begin to create safety in small groups. Many of us go to dinner together the night before and begin bonding. Some are too exhausted and/or frightened to engage the night before and I meet them for the first time on the shuttle or at the airport.

Since we will accept anyone as long as he or she has a letter from their doctor saying that person is "fit to travel", I never know what levels of health I will be dealing with. Needless to say, there are many hidden surprises in my work. One consistent fact that is never going to change is that we are going to make a statement as a group maneuvering through the airport. This epidemic is real; people need to get used to it and deal with their feelings. It's a shock to see a group of twenty-five HIV+/PWA's together.

Once we get there, I privately sob to alleviate the stress and then hit the ground running to help facilitate the first evening gathering that night. Meanwhile my partner, Page has not had an easy job either. She provides mini-AIDS education courses, lines up doctors, finds medical equipment and assures the people on the other end not to worry. Ironically, some have fled to these places in paradise to forget the loss of a loved one or are in denial about their own HIV+ status. We provide more people at the destinations with opportunities to do some emotional clearing around AIDS than we ever imagined.

HIV+ people are our society's contemporary lepers in many ways.They are touch deprived, frightened, and we have to respect anonymity and confidentiality at many levels. The ignorance that surrounds HIV is horrifying. We haven't been able to find many resorts willing to embrace us. It's been a long, tough four years setting up this project. I keep forgetting that everybody doesn't think that people who have contracted HIV through sexual transmission haven't done anything wrong. I also keep forgetting that people don't understand that they have to share needles and/or sexual intimacy with our clients to become HIV+.

We have clients who live in fear because it's not safe to disclose their HIV+ status. Imagine the effect of that stress on an already compromised immune system. There's an old saying in the twelve step programs, "You're only as sick as your secrets." Having people afraid of AIDS is enough to make anyone sick. I feel there are many people walking around who are HIV+ feeling sick because of the secret they are holding. Also, they have the fearful notion that it's only a matter of time before they get sick. As one client recently told me, "Having HIV is like sitting on death row. You never know when it's going to happen."

Not everybody thinks that people who have contracted HIV through sexual transmission haven't done anything wrong.

In a safe place where people accept of whatever stage of positivity the client has, the essence of who that person is emerges. This displaces the dominance of the mindset that focuses on what they have, in which who they are has become secondary, if not completely lost. There is the chance to resume the practice of self-disclosure, which has been completely obscured by the drama of the virus. I am referring to self-disclosure in the sense of transparency: the mirror that we can possibly provide for each other. Once the masks come off as well as the armor, the honesty and sincerity that comes forth are as real as life can get. One client wrote," I found it to be a great plus being in a totally supportive and open environment. There was no need to "test the waters" so to speak. Being completely open about my health status and orientation was a real boon to me. (Yes I am one of those anomalies -- I continue to work full-time and I am an unannounced PWA). But this was a non-judgmental atmosphere."

Using the metaphor of the removal of clothing for self-disclosure, there comes a point in the week where we finally all get naked. Some stay dressed to some extent until the last few days of the trip. Most start to undress fairly early in the week. The group dynamics change as the week progresses and the familiarity breeds contentment.

Our services and tools include love, compassion, Hanna Somatics, meditation, breath work, healing touch, and a host of other modalities in the format of playshops presented by professional facilitators. We emphasize fresh and healthy food and most importantly, laughter.

Wellness Vacations are designed with a focus on fun. Playshops are offered with a Chinese menu philosophy; travelers ordering only what appeals to them. Playshops might include stress management, relationship strategies, and fitness activities. Some evening activities are a talent/ comedy night, a local festive celebration, a guest speaker or a wisdom circle.

An evaluation said,

"When I think of DD I think of smorgasbord. There were many option/activities available. And I was free to take advantage of whatever I wanted. I found the daily morning Somatics exercises to be the most rewarding. But there were some who never attended. Obviously what was important to me was not important to them. But I never was pressured to attend any scheduled activity. Events were simply there and participating or not (for whatever reason) was an individual decision. Also, the schedule was not cast in concrete. Alterations were made to be as accommodating as possible."

I actually never know what the group experience will be like until the week gets underway. We can't assess the levels of health until then. Some groups choose to waive activities altogether. As people teaching what we need to learn, we eliminate our attachments and expectations. Destination Discovery travelers write their own script daily, as the emphasis is based on the premise that, as Thomas Hanna said, "All human beings are self-aware, self-sensing, and self-moving. They are self-responsible somas."

Destination Discovery attracts amazing facilitators; they are truly a gift to work with. They sometimes feel odd taking money for their work and one has provided a scholarship for an HIV+ friend with his pay. It's almost as though we heal as much as the clients. The clients teach us how to live, as we do them. One facilitator, Jeff Rozzelle wrote, "The reason I chose to become a facilitator for DD is because it's fun. I want to surround myself with people who work as a team and have fun creating an environment to heal. DD embraces the miracle of love and when the circumstances of life reach overwhelm, or limit, we accept this vulnerability as the moment of rebirth with amusement. This is why each wellness vacation is unique and that is why I look for it in my own healing process." "A major Mahalo (thank you) from the Big Island of Hawaii to all of you who make Destination Discovery possible each time."

Breath, present time, love and compassion. With only four things to remember, the rest is commentary. We bring the finest talent has been brought together in every area of personal vitality and wellness to staff these unique vacations. Although the professionals teach different modalities, we all concur on these main four concepts.

Our staff shares this belief: "our most immediate environment is our, body, mind, and spirit. It's entirely possible to rejuvenate the body and restore the spirit safely with professional facilitators who express kindness and a sense of humor." Norman Cousins has influenced the itineraries. We respect the traveler's choices concerning medication and treatment choices. How we personally feel about allopathic versus, Eastern, versus Holistic, etc. is private. The common denominator is better, not longer; we never purport to have a remedy for any presenting complaint, nor do we make any promises of cure to travelers. I can say without reservation that if, they give the vacation a chance, they will have fun and learn some valuable stress management and chronic pain strategies.

On a vacation in 1996, it occurred to me that each time we travel we create a unique kind of tribe. It's definitely a situation of family dynamics playing out, except this time we have chosen to be there. Men and women become the emotionally healthy and accepting parents and siblings that most of us did not have. This is especially helpful in the case of the HIV+ persons, who in many cases do not have the support of their family of origin. They are in search of fellowship and community, which they indeed find on Wellness Vacations.

Follow-up support is an important component of our success. I think of Wednesday in my curriculum as the place to begin to pose the question, "How are you going to implement the new tools you have gained once you get home?" Whichever of the eight limbs of yoga resonates with that person is emphasized. We always try to network clients through the Novato Institute for Somatic Research and Training to connect people with Hanna Somatic Educators near their home cities.

Believe it or not, many of our travelers have expressed gratitude for their HIV+ status. On a vacation in Fall of 1995, many clients were embracing the virus as if it had become part of them and therefore were sending it love and acceptance. Others felt the virus was a wake-up call, and they had finally begun to live life fully as a result. They were able to take the death sentence and turn it into a meaningful lifestyle.

Each group is different and not all embrace HIV like a friend; many do voice if it wasn't for HIV, they wouldn't have had the experience of Destination Discovery; they express gratitude for that. My only response I have is that my clients are my role models. They have courage that is grand to behold, and I'm grateful to have the privilege of knowing each and every one of them. They are like angels.

One client wrote in a letter to an editor about Destination Discovery, "Through conversations with some of the HIV+ individuals who have participated in the "Wellness Vacation" I have discovered we each feel we have received a gift by being in a magical place where being HIV+ is the norm. Despite the varying agendas, all have been present to explore their own healing paths, whether the focus of their intent has been physical, emotional and/ or spiritual. From this place we have returned to the lives we often feel is without choice. We now have the realization that we possess new knowledge and skills to create choices to live in a different way, despite the fear and difficulties of living with HIV. We now realize we are not as alone as we feel. We now realize the power of love, support, camaraderie, and compassion. It is a culture whose time has come, for me, for my new brothers, and perhaps for the world."

We have many travelers who have traveled with us for a second time. With that kind of endorsement, it seems to me the company is on the right path. Our intention is to expand our population beyond those who are HIV+. I hope we will be serving seniors, for instance, people feeling hopeless and discouraged upon retirement. Health care costs soar for many after compulsory retirement. It seems as though no matter what their issues, when people get introduced to yoga and Hanna Somatic Education, they all get better. There is something to be said about travel also. Exotic destinations not only stir the soul, but also strengthen the spirit. People feel better when they open their hearts and minds to other paradigms. This paradigm shift is so noticeable for our travelers, that we have received calls from new clients saying, "I don't know what you did to him, but he touches my arm and looks me in the eye now when we talk. I want whatever it is." Of course the answer is complex and yet at the same time simple....It's unconditional love and acceptance while encouraging self-regulation; using the first-person paradigm of the teachings of Thomas Hanna.

This article was originally printed in Somatics: The Magazine/Journal of the Mind-Body Arts and Sciences, Spring/Summer 1996. (It has been updated to present time.)

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Cynthia Lindway is a certified Hanna Somatic Educator practicing in the Napa Valley. She is also a certified Integrative Yoga therapist and a Kripalu Yoga Instructor and uses those principles in her approach to stress management education.

She completed her first three years of undergraduate work at the University of the Americas in Puebla, Mexico, finishing her Bachelor of Science at the School of International Service at American University in Washington, D.C.

Currently working on a Masters degree and building a private practice, she presently teaches two weekly Somatics classes at Napa Valley College.

She can be reached by e-mail:

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    copyright ©1997 Cynthia Lindway
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