BOOK MARK : Surviving AIDS...
While I would never have wished for AIDS, the truth is I’m happier now than I’ve ever been. Having AIDS has been like going through 10 years of therapy--every week.
AIDS has taught me the preciousness of life and the healing power of love. I’ve been more productive than ever before. I’ve traveled the world and met hundreds of wonderful people that I’m sure I would not have met any other way. I’ve tried to see AIDS as a challenge to begin living, instead of a sign to begin dying.
AIDS forced me to take responsibility for my own life--for the choices I had made and the choices I could still make. For better or worse, AIDS has made me the man I am today.
. . . For those of us eager for Western science to come up with some answers as to why some people have survived AIDS, our best hope is probably the preliminary, largely descriptive work of Dr. George F. Solomon, Lydia Temoshok, Ph.D., and their colleagues.
Solomon, Temoshok and others have completed a study on 18 long-term AIDS survivors. (Not all their subjects were long-term survivors of full-blown AIDS; several “only” had AIDS-Related Complex.)
In addition to extensive blood work, the researchers monitored survivors for skin conductance, respiration, heart rate and finger temperature, while the subjects described their past week’s experience of anger, happiness, fear and love. Callen describes the study as “paid for with private money from Norman Cousins and the Task Force on Psychoneuroimmunology at UCLA.
Solomon refers to this study as “impressionistic” and repeatedly cautioned against overinterpreting results based on such a small number of subjects. Temoshok is even more cautious about drawing conclusions on the basis of their study. Despite their cautions, both were willing to say their study confirmed that “positive coping was positively correlated with a variety of immune functions.” (“Positive coping” is fancy psychoneuroimmunological argot for “having the right attitude.”)
In designing their study, Solomon’s group did something radical in its simplicity: They asked a group of five long-term survivors to act as consultants and to describe the factors they felt had contributed to their longevity. Using the survivors’ self-assessments, Temoshok and Solomon designed study questionnaires.
After comparing the factors identified by the consultants with reports from survivors of other life-threatening diseases, the Solomon group hypothesized a number of characteristics that might distinguish long-term survivors of AIDS. Paraphrased and condensed, their hypotheses were:
1. Survivors are realistic about the seriousness of their condition without being fatalistic. They refuse to believe AIDS is an automatic death sentence.
2. Survivors are willing to take responsibility for their own healing and to make major life-style adjustments to “accommodate disease in an adaptive way.” Survivors believe that physical fitness and exercise contribute to healing and believe their “personalized means of active coping” can have beneficial health effects.
3. Survivors tend to have extraordinary relationships with their health-care providers. Survivors spoke of a healing partnership with their health-care providers, and were neither passively compliant nor defiant.
4. Survivors are passionately committed to living and have a sense of meaningfulness and purpose in life, of unmet goals. Often the diagnosis itself enables them to find new meaning to life.
5. Survivors tend to have faced and to have overcome past life crises.
6. Meeting and talking with other people with AIDS in a supportive environment, especially shortly after their own diagnosis, was deemed important. Being “altruistically involved” with other people with AIDS--being self-concerned without being exclusively self-involved--was considered beneficial by survivors.
7. Survivors are assertive and able to communicate openly, including the ability to say no. Survivors nurture themselves and are sensitive to their body and its needs.
This list of traits jived with my own sense of the characteristics shared by the long-term survivors I have known. But Solomon apparently has laboratory evidence that, he said, “essentially confirmed” these traits can improve immune function.
Solomon hinted that his published report on this study would contain a number of intriguing correlations between attitude and immune improvement. Until the results are published, however, the closest thing to advice for long-term survivors that I could extract from my conversation with Solomon and Temoshok was the following generalization by Temoshok:
“It’s probably safe to say that dis- stress is bad for you. Distress indicates a failure of coping. In other words, stress itself is neither good nor bad. It’s how we deal with it.”
She supported the holistic principle, that it is important to listen to one’s own body, and one’s thoughts and emotions:
“Listen to your body and to your mind as to how you’re feeling. For example, if you’re running and your body doesn’t feel good, stop running. Or if you find yourself getting mad at someone a lot, maybe that isn’t such a good person to hang around with. Better to hang around with people who make you feel better. Or if your job is not providing a sense of meaning but is just providing hassles, that may be something to question.
“In other words, pay attention to all of your symptoms, whether they’re physiological or psychological. If you’re feeling distressed, those feelings are telling you something; listen to them. It’s not bad to have those feelings; feelings are signals that something is wrong in your environment, and the idea is to do something to change whatever is wrong. So that’s all I would say.”
My conversations with Solomon and Temoshok confirmed my own suspicions that each person’s healing strategy would be individualized. One man’s stress is another man’s distress.
But I worried that “listen to your own body” was too glib of a generalization to be useful. I asked Temoshok if she was suggesting that one’s attitude was all that mattered. She bristled at the oversimplification and said precisely such misrepresentations of psychoneuroimmunology trouble her:
“A common and dangerous misconception is that we’re saying that if you’re sick, you must have a bad attitude and that getting well is a simple matter of having the ‘right’ attitude. That’s wrong, dead wrong. It is very negative for anyone who has a disease to have the feeling that he or she is to blame for it because of his or her attitude; and that if only he or she had the ‘right attitude,’ the disease would miraculously go away.”
Solomon remains optimistic about the ability of psychoneuroimmunology to crack the mystery of why some have survived AIDS beyond expectations. While the search goes on, he felt it was important to keep challenging the myth that AIDS is invariably fatal.
“People have been extrapolating the exponential curve of death and then concluding that everyone who’s HIV (human immunodeficiency virus)-positive is going to die,” he said. “Well, I don’t believe it. In the first place, we know there’s enormous variability with AIDS. Since survival is possible, isn’t there a likelihood that one can shift these curves, that you can help people live longer, more healthy lives?
The obsession in the media and at the professional level with AIDS being an automatic death sentence feeds upon itself. Hopelessness and helplessness are the very worst emotions. Hopelessness is the component of depression which is the most malignant to the immune system. We knew that way before AIDS.”
1990 by Michael Callen. Reprinted with permission of Harper Collins Publishers.
* BOOK REVIEW: “Surviving AIDS,” by Michael Callen, is reviewed on Page 7 of today’s Book Review section.
