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Being Alive

SURVIVING HIV: Some Thoughts for My Brothers and Sisters


Being Alive 1993 Nov 5: 21

So, you've tested positive for HIV, or you actually have AIDS; me, too! I was exposed in the late 1970s and, when I tested HIV+ in 1985, almost everyone portrayed HIV as a terminal disease which no one survived; 100% fatal. This message was communicated by the media, physicians, other caregivers and persons with HIV themselves. Sadly, this fatalistic message hastened the deaths of thousands and is still believed by most people today in 1993. This message is false. HIV is survivable. There are many long-term survivors of 12-15 years who remain healthy. I don't have all the answers, yet I'd like to share with you some ideas on how to be a long-term survivor. Survival yours, mine, ours. Listen up! Decide Whether You Really Want to Live "Of course, I want to live," you respond. "Wouldn't anyone?" In my experience... no. In fact, some people are relieved to have HIV because it absolves them of taking responsibility for their lives. It validates being a "victim." The foundation for HIV survival is a conscious choice that life is precious. This requires some deep self-examination. The will to live is a powerful force. Alone, it does not guarantee survival, yet it empowers the possibility for survival. Without the will to live, you are probably not going to survive HIV (or cancer, heart disease, etc.). If this seems harsh, reach deeper inside, ask yourself what's true for you. Life isn't fair it's not fair for the skeletal children of Somalia, either. Can we hold these children in our hearts? Can we find meaning and purpose amidst so much pain? Do you really want to live? No one else can answer these questions for you.

Learn about HIV The information is available. It's your responsibility to get it. There are many sources of good information, e.g., books, medical journals, HIV newsletters, the resource library of your local AIDS agency, HIV seminars, weekly newspapers like the San Francisco Sentinel (if you are heterosexual and homophobic, get over it and read the gay/lesbian press where cutting edge HIV information appears). If you live in or near West Hollywood, A Different Light Bookstore carries more than 100 titles on HIV. Read some of them! Talk to your physician, talk to other people living with HIV, particularly long-term survivors. I've been amazed over the years how little people with HIV know about HIV. Hey, it's your life! HIV is survivable but, if you don't care enough to do some homework, why should anyone else care? Wake up! Learning about HIV will support your ability to make knowledgeable treatment decisions. Learning about HIV supports self-empowerment. It's the next step after deciding you really want to live even if you're not 100% sure you want to live.

Create a Partnership with Your Physician Your relationship with your health care provider is crucial. Your doctor can be a tremendous support or a major negative influence. Ask yourself some questions: Does my doctor care about me? Does he/she have a compassionate heart? Is my doctor knowledgeable about HIV? Does my doctor encourage me to learn about HIV? Does my doctor answer my questions? Does my doctor encourage me to share treatment decisions? Does my doctor have an inquiring, open mind about alternative therapies? Will my doctor support me medically and emotionally even when we have honest disagreements? (Yes, it's OK to disagree.) If you can answer `yes' to these questions, consider yourself fortunate because you have a valuable ally to face the coming challenges. The typical person with HIV cannot answer these questions `yes.' I am not impressed by vast technical knowledge if physicians are unable to connect with their patients at the healing level of the heart. Often, much of their technical "scientific" knowledge turns out to be inaccurate, anyway. Choose a physician with heart.

Make Peace with Ambiguity and the Unknown HIV is a journey into the unknown. And the unknown is where our deepest fears reside, particularly the fear of death. With delicious paradox, the unknown is where our growth as human beings occurs. HIV challenges us to examine our fears at ever deeper levels. It tests our willingness to move beyond our conditional thinking and accept ambiguity perhaps, even to embrace the unknown as welcome adventure. It offers us the opportunity to know our own courage and the courage of others. It is the realm where our hearts can open to the limitless wonder of mystery. Too metaphysical, you say? Perhaps, but you are going to die (maybe tomorrow, mundanely, in front of a bus). Little by little, examination of our fears will free us to live creatively, will enable us to forge our own passionate lives. I don't have dramatic answers here; rather I share the questions with you.

Strengthen Your Immune System With a strengthened immune system, it's possible to withstand HIV infection. While there is no "perfect" health protocol (just as there is no "cure" for HIV and may never be), there are proven approaches to immune system health, for example: balanced nutrition without becoming obsessive; quality multi-vitamins with emphasis on anti-oxidants like vitamin C; acupuncture to achieve inner balance; Chinese herbs; regular exercise; massage; some form of meditation; elimination of parasites (flagyl worked for me; herbs can help); elimination of alcohol, recreational drugs, caffeine, sugar and tobacco. Also, learn about and consider experimental alternative therapies such as DNCB, acemannan, bitter melon, Compound Q and others. I personally believe DNCB shows much promise and needs to be studied in clinical trials. The average physician has never heard of DNCB because it addresses a different model of the pathogenesis of HIV. Do the research yourself! Think Twice About AZT Give your immune system a break! Scientists and physicians are not unanimous in endorsing AZT and its nucleoside cousins, ddI and ddC. In fact, the new NIH guidelines to physicians state: "Treatment with AZT is no longer necessarily recommended for early HIV infection." This is a significant break from the 1990 guidelines. The recent Concorde Study demonstrated that, while AZT may have some benefit in delaying disease progression, it has no benefit for survival. At the very least, read about AZT therapy, talk with other HIV+ people and don't allow yourself to be pressured by your doctor or anyone else, including me. Explore your options and make an informed choice. I believe that AZT therapy is not only ineffective, but actively harmful to our survival. In my personal experience, the vast majority of long-term survivors have never taken AZT. These are my personal opinions and observations, not medical advice.

Get Involved and Serve Others Why are we here if not to learn kindness and how to give and receive love? Does God/Goddess/Great Spirit care about our accumulated toys? How important are our "secrets"? Does holding on to "shame" feel good? Does it serve anyone? Why are we so frightened of truth? Just a few of the many questions of being human. All people affected by HIV are our extended family (actually, all people are our family). We can get involved and help create a more humane world for ourselves and others. We do not have to become Mother Theresa replicas, only more fully ourselves connected to the world we steward. Another personal observation backed by numerous clinical studies is that long-term survivors do not sit home and feel sorry for themselves. They volunteer, take political action and discover purpose in their lives. We can live wonderful, creative lives and inspire others to more deeply touch their own hearts. We can make a difference! These are some thoughts about surviving HIV. It requires courage and an open heart to be fully human. AIDS, perhaps, makes a contribution by dramatizing this challenge for us. I share the journey with you.

(Hap Stewart is a member of the Marin County AIDS Commission and a long-time volunteer with the Marin AIDS Project.)


Information in this article was accurate in November 5, 1993. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.