San Francisco Chronicle - Monday July 31, 1989
Torri Minton, Chronicle Staff Writer

"All through the night I would bolt upright and clutch the pillow," he says, "as if I were clutching onto life."

Earlier that day, he learned he had cancer. It wasn't until a few months later that they began calling his strange new disease AIDS.

Seven years and a hundred lost friends later, he is still embracing life.

There are other long-term survivors of AIDS. Their paths of physical, emotional and spiritual healing, and medical histories, are different. Their lives have not been without pain. But while they accept their diagnoses, they share a passionate determination to live.

In the words of Andrew Small, diagnosed exactly seven years ago last Thursday, "We're feisty."

Long-term survivors and researchers alike agree that there is more to it than that. Just what, however, is a matter of continuing study and debate. New treatments, early diagnosis, strong immune systems, basic health and access to medical care all come into play.

"Yes, we are seeing longer lengths of time, and, yes, new treatments are probably a factor, but, yes, there is probably also a selection factor that is part of the natural history of this disease," says Dr. William Lang, clinical director of San Francisco Men's Health Study and a general internist at Children's Hospital in San Francisco.

Attitude, he says, may be a factor.

"Certainly an extremely nervous individual worrying oneself sick may be more prone to infection than a person who is willing to move forward with his life as an (HIV) sero-positive," Lang said.

The survivors themselves strongly believe there is a close link between their minds and their bodies. They have changed their attitudes about life and death drastically and lead more fulfilling lives than many healthy people.

They are bucking incredible odds:

A long-term survivor is one who is alive three years after diagnosis, according to the federal Centers for Disease Control.

Only 9 percent of those with AIDS in San Francisco survive that long, according to the city Department of Public Health. Just 3 percent live longer than five years.

But little by little, people with AIDS are outliving the predictions.

Eight years ago, the median survival period was 10 months, says Dr. George Lemp, chief of the AIDS surveillance branch of the city health department. By 1986, it was 12.5 months. For those diagnosed in 1987, it was 15 months.

The survivors are writing books about AIDS. They are giving speeches about it. They are forming AIDS organizations. They are having relationships, laughing, crying and living their lives.

WIL AND GEORGE

"It Became a Teacher'

Wil Garcia and George Melton gave it all up for a Winnebago.

Melton was a hair colorist in Trump Tower and Garcia was a computer analyst for a Wall Street investment firm. They had a Manhattan apartment, a Fire Island summer home and a wild nightlife.

In 1985, Garcia was diagnosed with AIDS and Melton was diagnosed with ARC, AIDS-Related Complex. Terrified and sick, they set out to search for solutions.

They traveled to Mexico to buy experimental drugs, then searched for alternatives. Garcia started to develop a program of healing imagery. Melton began meditating.

They sought out support groups. They focused on healing their minds. They began to get better.

"What I began to get was, maybe you can't change the virus but you can change yourself," says Melton. "It became a teacher instead of a death sentence."

Garcia, 43, and Melton, 36, have been together for 11 years and recently rented a house in Mill Valley. They say they have taken no drugs and have had no symptoms since July 1986.

They do not advocate that people give up medicine, but, like many other long-term survivors, suggest it should not be relied on exclusively. "In the case of AIDS, it doesn't seem to be enough," says Garcia.

In February 1988 they took to the road to talk about their recovery. The men, who have looped the country twice, through 55 cities in the past year, found four characteristics among long-term survivors: the refusal to accept the fatality of the illness; a purpose for living; the ability to express feelings; a willingness to follow one's own guidance for healing.

This is not to mean that people who have come to love themselves and died have failed, says Garcia. "Life or death is not really the issue, but peace is, people learning to love themselves," says Melton, the author of "Beyond AIDS: A Journey Into Healing" (Brotherhood Press, $10).

"Healing the body is a byproduct of healing the heart," says Garcia. .

DAN TURNER

"I Had a Mission'

"I set about to enjoy my life on a daily basis, moment to moment, and I'm still here," says Dan Turner.

It was late in 1981 when he first noticed two lesions just above his right ankle. In a few months, Turner was diagnosed with Kaposi's Sarcoma, an AIDS-related cancer that appears as pinkish-purple tumor masses. "I felt I had a chance to beat cancer. My attitude was that I would fight." Then they began to call it AIDS.

Turner, a composer and playwright, plunged into his creative work. Expressing his feelings helped relieve stress. He quit his word-processing job.

"I found I had a mission," says Turner, 41, one of the longest-living survivors in the country. "It helped me take my mind off myself to do something for the community." Through the years he has tried, among other things, dance therapy, meditation, praying, massage, acupuncture, support groups and visualization. He eats a balanced diet and exercises regularly.

He has visualized his cancer cells were like shredded wheat he could break up. "Certain things you may not understand but you call upon," Turner says. His cancer has been in remission for seven years.

Muscles show underneath his T-shirt. But he has suffered anemia and a recurring cough. He lost 15 pounds during the past two years and was once hospitalized with a painful virus infection called shingles.

Although some shun traditional doctors, Turner sees his regularly and takes medications including AZT, the only drug now approved to treat the AIDS virus directly. Like many others, he lives on about $10,000 a year in disability insurance and other benefits.

He writes and composes music, does interviews, is studied by doctors. He volunteers at the People With AIDS Switchboard, which he started in 1984. The switchboard - manned only by people with AIDS and ARC - helps answer the onslaught of calls he was getting at home from people with AIDS all over the country.

AIDS complicated his love life but did not stop it.

"In my case, it is very important to me to try to continue dating," Turner says.

But it has not been easy.

A lover for three years who was a mechanic often worried about getting infected because he cut his hands at work.

A dinner date with another man ended as soon as Turner broached the subject.

"It is such a paradox," Turner says, "to want to relate to somebody intimately and have the fear you might kill them or they might kill you."

He says he has never lost a lover to AIDS. Turner has a book in progress, tentatively called "Vital Signs," about his experience of living with AIDS. These days, he is looking for an agent. He speaks at AIDS workshops and visits people in the hospital, among other things. He says AIDS has taught him to be more giving.

On one hand, "We live with the threat that we're going to get some hideous disease," he says. "You never know what's going to pop out of the sky and hit you in the face."

On the other hand, "I want my message to be one of hope. I want people to give it their best try." .

NIRO ASISTENT

"I Started Living'

Niro Asistent says she tested positive for the HIV virus four years ago, twice, at the Suffolk County Health Department in New York.

She was diagnosed with ARC and thought she had only 18 months to live.

Six months later, she tested negative. She says she has been testing negative ever since and has the documents to prove it.

Doctors who have heard of such cases are skeptical. They know tests can be wrong. But there have been a handful of HIV reversal cases recorded.

Asistent is writing a book, "The Healing Yes," for Simon and Schuster, and lectures and leads healing groups all over the country.

A 44-year-old therapist and mother of two, she believes she healed herself. She says the key was her state of mind.

"I totally accepted that I would die, so I started living," says Asistent.

She was center coordinator for a Bhagwan Shree Rajneesh meditation center on the East Coast and was spending time at the settlement in Oregon when she got very sick in May 1984.

She had a strange high fever, sweats, chills, body pains and a severe urinary infection.

Her bisexual male lover tested HIV positive, and the pieces of the puzzle started to fall into place.

"What happened was an incredible wake-up call," Asistent says. "I said "holy s---, I have 500 days left to live. I cannot waste one.' "

She changed her life, becoming quieter, closer to nature, closer to the people she loved. A walk on the beach became much more important than all the "social crap" she was involved in. She quit reading the newspaper and would not watch violent movies. What she was going through was confrontational enough, she says.

She started eating health foods and went on a liquid diet for four months. "I was fat and I wanted to die in a body I liked," Asistent says.

In March 1986, something happened.

She remembers practicing a special meditative walk on a snowy beach in the sunshine.

"I became kind of one with the universe, whatever that means. My boundaries disappeared," she says in a soft French accent.

She says she saw a vision of the Bhagwan. "Suddenly we were at the same level. He appeared to me. I literally saw him in front of me and we embraced, we merged."

Acknowledging that this might sound like "a lot of hoo ha," she says it was a turning point. "I had a deep knowledge that I was fine."

"Three weeks later my counselor was very amazed because my tests came back negative. I was no longer HIV positive."

Her lover died of the disease on February 4, 1987.

Asistent founded SHARE, The Foundation for Self Healing AIDS-Related Experiment, two years ago. For "the healer within," the program examines things like fears of living and dying and how to live a fuller life.

"I know the key to healing is acceptance," says Asistent, who moved to Lafayette from New York this month. "We don't want to live to avoid death, we want to live because life is so precious."

Although she didn't take any medicine, she does not recommend that to others. "I totally encourage people when they believe in drugs to take them. If you believe that carrot juice and dried apricots is going to heal you, it's going to heal you. If you believe AZT will heal you, it will heal you." .

TOM O'CONNOR

"I Want to Be Me'

Tom O'Connor was diagnosed with ARC in 1980.

These days, he says, he is "in the middle of a holocaust" and tired of feeling numb all the time. About two people he knows die every week.

He is in an intensive therapy group with the Institute for Personal Change in San Francisco.

"I want to live. I want to feel the pain, the joy, and I want to be me," says O'Connor, sitting on a piano bench in the living room of the house he shares with Dan Turner and three others. "I don't want to be a zombie any longer, feeling like I'm some creature from outer space observing all this but not being part of it."

Recently O'Connor, 42, a former financial adviser, went to the beach with his therapy group, where they beat up pillows that represented their fathers. The numbness, he says, stems from the way he learned to squelch his feelings when he was growing up.

"I don't want to be a little plastic movie," he says, his voice getting a little louder. "I want some depth in my life."

His search for healing has run the gamut. He tried macrobiotics, changed his friends, watched what he read and began paying attention to his thoughts closely. He read more than 100 books on diet and about 100 more on psychosocial issues, psychology and spirituality. He started to feel better and has not developed any opportunistic infections or lesions.

O'Connor has since written "Living With AIDS; Reaching Out" (Corwin Publishers, $18.95).

Although O'Connor has taken AZT, he says doctors have addressed only a very limited part of his life.

He helped to start the Healing Alternatives Foundation two years ago, a San Francisco group that makes available information on treatments and in some cases specific products that either are higher-priced elsewhere or not available in this country. O'Connor stresses that it is important to be aware of "the totality of our environment. . . ."

"What I've been trying to do is to look at my life, understand it is multifaceted and extremely rich. I have my physical body, I have my mind, my emotions, my spirit. I have my community, I have my universe.

"And if I look at all those interactions and ramifications, and see whether they are beneficial to me or not, and then make appropriate choices, at a minimum I'm going to have a much better quality . . . and probably also a longer life.

"Which is going to be mine." .

ANDREW SMALL

"Humor Is Real Good'

Andrew Small, 36, is sitting on his living room couch in a loose sleeveless shirt and flowing black pants, chain-smoking Merit cigarets.

A shiny green sleeve from a costume lies on the couch. Two deflated pink balloons hang from a window shade. Two pink flamingos loiter in a corner. About 200 videos line the shelves.

Last Thursday was the anniversary of his seventh year with AIDS. He did not have a party, as he used to in those first few years. But he says he must send a card to his former doctor.

He spent the day rehearsing a part at the Renaissance Fair.

"I think a sense of humor is real good, and a sense of the absurd and the ridiculous," says Small, a former legal secretary and a member of the board of the San Francisco AIDS Foundation.

AIDS is the focus of his life, but it isn't everything.

Yes, he tries to eat a vegetarian meal at least once a week, had done the screaming-at-the-phone-books therapy, the support groups, and is involved in many AIDS organizations. At one time he was taking so many vitamins they filled a bowl in the morning and took a half-hour to take. It was too much.

"Now I love Stouffer's," he says of the frozen food.

He hasn't been able to quit his 20-year, two-pack-a-day smoking habit, even though he had the deadly Pneumocystis carinii pneumonia twice and almost didn't make it the second time.

"I did not want to spend my last 18 months wanting a cigaret," he says.

Small took AZT and didn't like it. Now he is taking only aerosol pentamidine, the drug for the pneumonia.

"My feeling is, if it ain't broke, don't fix it," he says. Like many survivors, in the last few years he has found a new spirituality. After a 15-year break from religion, he started going back to church. Now he volunteers on a committee at Grace Cathedral once a week.

Church, he says, gives him a sense of comfort. "It was like coming home."

He doesn't feel he has conquered AIDS. He feels that he has learned to live with it. "I have a much richer, fuller life than ever before. I honestly believe I have something to do, that there are things I need to accomplish. When I have done that work I am supposed to do, then I will die."

NEW STUDY ON SURVIVORS

In a few months, the Centers for Disease Control may make public a study of the characteristics of long-term survivors of AIDS.

Among the findings of the study were that long-term survivors "tended to more likely be white homosexuals or bisexual men whose main diagnosis was Kaposi's Sarcoma," says Dr. James Buehler, an epidemiologist at CDC.

"It may have to do with access to health care," Buehler says. "A person who is an intravenous drug-user may not be able to use health services as readily as someone else. There may be other problems with someone who is a drug user at increased risk to a variety of infections."

There were 99,936 cases of AIDS reported in the United States as of June 30, according to the CDC. The disease has claimed 58,014 lives in this country.

WHERE TO CALL

Wil Garcia and George Melton speak at 7 p.m. August 20 at the Swedish American Hall, 2174 Market Street. For information call 383-6010. The number for the People with AIDS Switchboard is 861-7309. The switchboard gives advice, emotional support and referrals. The next Self-Healing AIDS-Related Experiment program in San Francisco begins July 28 at the University of San Francisco, Lone Mountain Campus. SHARE can be reached at 284-7459. The Healing Alternatives Foundation is at 1748 Market Street. The number is 626-2316.

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