Surviving and Thriving With AIDS
Collected Wisdom, Volume Two
From the articles "AIDS 201" and "Surviving and Thriving with AIDS," both by Michael Callen. c 1988, People with AIDS Coalition, Inc. reprinted with permission.
I have become more convinced, as a result of my own experience with AIDS and from my interviews with about twenty-five other long-term survivors, that there is a bi-directional mind-body connection which some day we may be able to pin down scientifically. I think the body needs to receive a "live" message. The mind needs to tell the body to fight--that life is precious and worth living. The mind is a great, largely untapped pharmacy and we've got to find creative ways to mine it. Joy juice is what the body needs to live. And hope is like the air that we breathe; without it, we wither and die. . . .
In the first years of AIDS, I had a pretty simplistic notion of hope. I thought that if one believed hard enough in the possibility of survival--if you were a "fighter"--you could beat AIDS. Then some of the bravest and best--fighters who had believed as much as I had that they'd beat this thing--fell to AIDS. I have refined my belief: having hope won't guarantee that you'll survive AIDS, but not having hope seems to guarantee that you'll succumb quickly.
Although I'm winded from six years of more or less peacefully co-existing with AIDS, I must now readjust to the possibility of lymphoma (and to the reality of KS). Even in dark moments, when doubt and hopelessness threaten to consume me, I am aware of an almost palpable will to live. The preciousness and exhilaration of living overwhelm. The hysterical joie de vivre of Julia Child cooking videos, my cookie cutter collection, the imminent release of Streisand's next album, and the secure sensation of my lover coming to bed sometimes make me want to weep with joy. I should miss them so, if I died. In the end, I'm convinced that it's as rational to have hope as it is to give up. If 85% of people diagnosed with AIDS are dead after five years, then 15% are still alive. I intend to remain among that prophetic minority.
What Does It Take to Be a "Long-Term Survivor"?
The CDC defines a "long-term survivor" as a person who has lived at least twice as long as the median survival period for all people with AIDS. Using this formula, anyone still living at least three years after diagnosis of their first AIDS-related opportunistic infection (or first T cell count below 200) would qualify.
Becoming a "member of the club" isn't easy. As Lew Katoff, former Director of Client Services for New York's Gay Men's Health Crisis, noted in a speech before the VII International AIDS Conference:
Living with AIDS can be among the most stressful of human experiences. All activities of daily life are profoundly affected by loss of stamina, aggressive and toxic treatments, and the ever-present possibility of new life-threatening infections. Living with AIDS requires extraordinary adaptations. Most difficult of all, the longer one survives after a diagnosis of AIDS, the more likely one is exposed to these challenges.
Lew Katoff's speech was adapted for publication in the October, 1991 issue of Positively Aware.
Recently, universities and AIDS service organizations around the country have begun to study long-term survivors to see if they are different in some way from people who haven't lived as long. So far, researchers have found that attitude seems to be a key ingredient to longevity among people living with AIDS.
Taken together, the results of several prominent studies have shown that the majority of long-term survivors:
- Are realistic--they understand and accept their diagnosis. They take steps to educate themselves about HIV/AIDS and keep abreast of the latest medical advances.
- Are life-oriented--willing to learn to live with their condition instead of waiting to die from it. They reject the idea that AIDS is a "death sentence" and refuse to give up without a fight.
- Are pro-active--taking charge of their own life and health. They refuse to be helpless or hopeless and do not wait for others to take care of their problems for them. Instead, they learn to handle things themselves. Long-term survivors tend to be assertive--they can say "no" when the situation calls for it. They make decisions based on what they believe is best for them, rather than what others want or think is best.
- Are skilled medical consumers--developing an active partnership with their doctor, in which both have an equal say in how the illness is managed. They are not afraid to ask questions, decline treatments they're not comfortable with, ask for additional opinions, and even change doctors if they don't feel they're getting the care they need or want.
- Are analytical--able to weigh the pros and cons of an issue and make informed choices after evaluating all the facts at their disposal.
- Are self-aware--able to recognize and interpret the signals their bodies are sending them and communicate that information effectively to their health care providers.
- Are optimistic--feeling strongly that life is worth living, and that good times lay ahead. They continue to pursue work and other activities they find personally meaningful to the full extent their health permits. There is a sense of "unfinished business," of unrealized hopes and dreams that must be fulfilled. Long-term survivors tend to feel their lives, and sometimes even the disease itself, have purpose.
- Are flexible--willing to make adjustments in personal habits, fitness level, or lifestyle to better combat the disease.
- Are veteran copers--often having previous experience in overcoming obstacles or difficult situations.
- Are accepting of their own limits--willing to ask for and receive outside support. Many also find value in giving support to others through volunteering, education, advocacy, and activism.