"Surviving Is What I Do"

By David Brand

Aladar Marberger's Manhattan apartment is a gallery of joy and pain, limned in oil, tempera, charcoal and fresco. In most of the likenesses, an insouciant, vibrant personality shines through, but in a few there is the kind of tension that results from great suffering. These are the portraits of an AIDS survivor, sketched and painted by Marberger's friends since it was confirmed , that he had the disease. They are a tribute to a man who will not quit. When Marberger learned in 1985 that he had Kaposi's sarcoma, a rare form of skin cancer that is sometimes associated with AIDS, his reaction was to fight the assault by the AIDS virus no matter what the cost in money or suffering. The co-owner of a successful Manhattan art gallery, he sold off paintings, two homes and an old mill, worth more than a million dollars -- a "war chest" for his battle against the disease.

For now, at least, Marberger, 40, is winning the battle. He is determined to qualify as an LTS, or long-term survivor, lingo for someone who has lived with AIDS for three years or longer. It is a term that applies to very few people. According to the Centers for Disease Control in Atlanta, the survival rate for 4,200 AIDS patients whose condition was diagnosed between late 1978 and 1983 is 2% to 5%, nearly all of them male homosexuals who contracted the disease through sexual contact. Such slender evidence is often taken as proof by desperate members of the homosexual community that they can overcome AIDS. "When people ask me what I do for a living," says Michael Callen, 33, a New York City musician who was discovered to have AIDS almost six years ago, "I say, 'Surviving is what I do.' "

These men are presenting researchers with a vital question that could be a key to controlling the disease: What is the secret of their survival? Dr. Jay Levy, a professor of medicine at the University of California at San Francisco who has been studying an AIDS survivor, says he is mystified by the phenomenon. "Why is he able to do it?" asks Levy. "Why can't others do it?"

Many survivors acknowledge their indebtedness to such modern AIDS drugs as AZT, which is believed to hinder the replication of the virus and is the only federally approved drug to treat the disease. But many also cling to the belief that AIDS can be controlled largely through mental attitude. That is the case with Ronald Webeck, 40, of St. Petersburg, who found "positive thinking" last year, nearly two years after he was discovered to have AIDS. He marvels that he is still alive while more than 50 of his acquaintances have succumbed to the disease. Although he tires too easily to hold a job, he is able to work with an AIDS support group, trying to "give hope to people to hang on." His survival, he says, is due to "my determination. I refuse to give in."

Thousands of other sufferers are turning to nutritionists, acupuncturists, herbalists, hypnotists and yoga instructors. AIDS sufferers swear by such self-help books as You Can Heal Your Life (Hay House) by Louise Hay, originally written for cancer patients. Another favorite is Love, Medicine & Miracles (Harper & Row) by Dr. Bernard Siegel, a Yale Medical School professor who theorizes that patients who take a role in their own treatment have the best chances of survival.

Positive thinking can surely be a powerful tonic, believes Dr. Jack Gorman, who is principal investigator for a National Institute of Mental Health study on the relationship between the course of the AIDS virus and the psyche. Preliminary evidence, he says, suggests that "depression and stress have bad effects on the immune system, while an optimistic and hopeful attitude has good effects." Other doctors continue to be skeptical about such thinking. "We all like to think that we have some power over what happens," says Dr. Richard Price, head of neurology at New York City's Memorial Sloan Kettering Cancer Center. "But in some situations we don't."

It is difficult, however, to explain the case of Louie Nassaney of Van Nuys, Calif., a robust 33-year-old who has defied doctors who told him in May 1983 that he had AIDS and would live for only three to six months. Today, even though he has Kaposi's sarcoma, tires easily and suffers from diarrhea, Nassaney works out for two hours in the gym three times a week, skis and plays racquetball. He shuns all prescription medicines, relying instead on a regimen of eight to twelve grams of vitamin C a day, garlic and herbs. His routine includes acupuncture and relaxation, as well as exercise. This highly disciplined life, he says, is keeping him free of colds, flus and other infections. "I believe that not everything is fatal," he says, "and I believe the same about AIDS."

Equally remarkable is David Chandruss, 25, of Chicago, who was found to have the disease nine years ago. He has recovered from pneumonia without the aid of medication five times. After a bout last year with two serious infections, he was put on interferon, which is supposed to boost the immune system but may cause pain. Now he is on AZT. "You have to have a cause to live for," declares Chandruss, who devotes much of his time to caring for other AIDS sufferers. He lives at a novitiate of the Alexian Brothers, a Roman Catholic order that runs an ambulatory-care center for AIDS patients. Despite his obvious energy, he admits, "It still takes me up to two hours to get out of ) bed some mornings, and it's a daily battle to stay ahead of the disease." Ultimately, Chandruss believes, his secret of survival is an absolute faith in his ability to stay strong: "If you just think about staying well, it won't work. You have to live it, eat it and breathe it deep inside."

For New Yorker Marberger, the price of that faith is pain, resulting mainly from the experimental drugs he takes, that is so excruciating he must take a "pain cocktail" every four hours. Thus far he has tried interferon, aerosol pentamidine, which is used to treat deadly Pneumocystis carinii pneumonia, and AZT. He has also received dideoxycytidine, an antiviral medication. The treatment left him with tearing facial pains. Last week he was back in the hospital after a bout of flu.

"I regard this as World War III," says Marberger. "I'm fighting it with every resource I have." Indeed, each of these men, in his own way, has found reserves of courage and strength in the battle against the virus. For New York Musician Callen, the battle is providing a new sense of purpose. He admits that he is "happier than I have ever been. I hate being sick, but I don't have time to be obsessed about death." It is an attitude that provides a glimmer of hope amid the devastation being wrought by AIDS.

With reporting by Scott Brown/Los Angeles and Mary Cronin/New York