Body Positive Book Reading Club
Fighting for Your Life: How to Survive a Life-Threatening IllnessBy Jerome Wolfe
San Francisco: William Hamilton, 2001, $14.95
In 1985, I joined the Los Angeles Shanti Foundation, which provided emotional support for people with AIDS. As a volunteer, I had many clients for whom I provided one-on-one emotional support. I also facilitated support groups for people with AIDS and led groups for other volunteers.
Through Shanti I met many HIV-positive people. Their doctors had told them that nothing could be done for them, to come back when they were symptomatic. At that time, none of the AIDS organizations provided support services for these people. With no one to turn to, they were terrified and desperate.
This situation bothered me a lot. I approached several AIDS organizations and urged them to extend their services to HIV-positive individuals. They were sympathetic but felt overburdened with the task of providing services for people with AIDS.
One night in August of 1987 I had a vivid dream of conducting weekend workshops for people who were HIV-positive. The dream detailed everything I needed to do. When I woke up, I knew I could make it a reality. Immediately, I enlisted the help of two friends, Kim Hartstein, a fellow Shanti volunteer, and Dr. Fred Wilkey, a psychologist. Two months later, we presented our first seminar, a three-day workshop that provided empowerment, emotional support and information. We called it "Positive Living for Us," or PLUS. PLUS was the first organization in the west to provide comprehensive services for people living with HIV.
After serving as Executive Director of PLUS from its inception to 1990, I decided to move to Monterey. At the end of 1990, the PLUS Board of Directors agreed to allow Shanti to take over the PLUS programs. PLUS has since been expanded to include seminars for women, African-Americans and Latinos (in Spanish). It has also been offered in many other cities, including Honolulu, Charlotte, Seattle, San Francisco, New York, Tucson and San Diego. I have continued to volunteer at PLUS seminars in San Francisco.
The advent of protease inhibitors and combination therapy in 1996 changed the face of HIV/AIDS. For most people, this disease has now become a manageable and treatable illness, much like diabetes. It is my conviction that PLUS was instrumental in saving the lives of hundreds of people who were able to prolong their lives until these effective therapies became available.
Yet, in the 14 years that the PLUS seminars have been available, only a few thousand people have been able to take advantage of the service. I realized that a book could condense everything in the PLUS seminars, that I could expand the scope to include all of the important factors that contribute to healing, and that this information could apply to all life-threatening illnesses.
The Purpose of This BookThis book was written to make you aware of the important decisions that you are making or will make regarding your health care. These decisions may involve the will to live, empowerment issues, dealing with emotions, the selection of health care providers, medical and alternative therapies, lifestyle and sexuality concerns, dealing with stress, finding support and exploring your spirituality. All of these areas affect your healing and survival. They all present many options for you. They all involve many decisions.
Don't expect this book to tell you what to do. This is not a "how-to" book. There is no single recipe for success, let alone a magic bullet. Everyone reacts differently to various treatments, therapies and healing modalities. I have found that those who consistently do best learn what their options are, pursue the best course of action, learn from trial and error and develop their own unique treatment strategy.
Under each of the above-mentioned topics I will discuss basic facts and their impact upon your health care. In the accompanying exercises I will ask you to explore the issues, options and decisions that are implicit in each of these topics. There are no right or wrong answers to the questions. Whatever answers, inspiration and empowerment you derive from this book will come from you, not from the book.
This is also not a passive or automatic "feel-good" book. It requires work -- hard work. Any good feelings will be a result of doing the work outlined in the book. This will require courage, honesty and perseverance. Changing habits, exploring emotions, finding out about yourself and becoming responsible are among the most difficult things you can ever do, but your well-being and your very life are worth the effort.
Even though the focus of this book is on healing and survival, it also involves quality-of-life issues. I believe that anyone who honestly and diligently deals with the issues presented in this book will ultimately gain in wisdom, peace and happiness. The powers of understanding, responsibility and commitment relate to every aspect of life. Whether or not they bring you a longer life, they will certainly provide a richer, fuller one.
Your OptionsHealth is determined by a myriad of factors, both external and internal, physical and psychological. These include the condition, functioning and interaction of the organs and systems of the body (the cardiovascular, lymphatic, nervous, digestive, immune, etc.) as well as infections by bacteria, viruses, parasites or fungi, deterioration of bodily functions, hereditary diseases, stress-induced illnesses and auto-immune disorders. Your health is likewise affected by how you interact with your environment and by your lifestyle: what you eat, drink and breathe, exposure to toxins, pollutants and radiation, rest and exercise.
When you are sick, your healing is often dependent on finding competent medical help and the best therapies and accessing help from other sources.
Your ability to do this can be affected by your emotional state, beliefs, habits and religious and cultural conditioning. For instance, being in a state of shock or denial may prevent you from seeking medical help. Having low self-esteem may make you feel unworthy of receiving or even asking for the best care. Believing that a faith healer, an alleged "cure-all" or God will heal you could result in your rejecting medical care. Believing that physicians are omniscient and infallible may prevent you from seeking other opinions, considering other options or asking important questions.
What you think and feel not only affects your ability to learn new options and make wise decisions but can directly influence bodily processes and thus play a significant role in the healing process. As O. Carl Simonton, M.D., medical director of the Cancer Counseling and Research Center in Dallas, Texas, and his psychotherapist wife, Stephanie Matthews-Simonton, write in Getting Well Again, "We believe that emotional and mental states play a significant role in susceptibility to disease, including cancer, and in recovery from all disease."
Back to the July 2001 Issue of Body Positive Magazine.
This article was provided by Body Positive. It is a part of the publication Body Positive.