For Tom Proctor, running in the New York City Marathon 18 days ago was a personal triumph--even though he didn't finish the event.
Proctor, an AIDS patient since August, 1984, completed 6.2 miles of the 26.2-mile marathon and decided to stop because he noticed his legs were swelling a bit.
"I could have finished the race, but for me it was not worth it," Proctor said when he returned to his Los Angeles home this week. "I decided I wasn't going to be a martyr. I started thinking about it and just running at all is a big deal."
The other five members of Proctor's running club, Run for Your Life, who do not have AIDS, finished the race. Proctor, 35, had planned a trip to Paris immediately after the race and said he didn't want to jeopardize that opportunity.
"The New York race turned out to be a real emotional experience," said Proctor, a longtime runner. "Then I went to Paris and rode my 10-speed around the city for two weeks. The whole thing was a very positive time."
The key word for Tom Proctor is positive.
He and a growing number of Southern Californians who have been diagnosed as having AIDS (acquired immune deficiency syndrome) are out to tell people that there are alternative approaches to dealing with the deadly disease, ones that so far have been successful for a number of persons who are surviving AIDS.
These are the people, like Tom Proctor, who have beaten the odds against AIDS to date. Scientists estimate that the average life span after a person is first hospitalized with AIDS and the related diseases it causes is 224 days.
But Tom Proctor and his friends are not talking about dying. They are talking about living.
"We're doing all this education about alternative healing with a combination of medicine," said Louie Nassaney, who was diagnosed as having AIDS in May of 1983. "Not everybody with AIDS has died. Some of us are here to prove it."
'Nothing to Lose'
Los Angeles physician Dr. Robert Brooks, who dedicates his practice to the care and well-being of gays, heartily agrees with the concept of combining alternative healing with traditional medicine.
"There is nothing to lose in this approach," said Brooks. "Modern medicine has a lot to offer. It's a tool. But we also have some power within us. We try to create a model of holism. There is a distinction between treatment and healing. Healing is something that the body does, that starts with what we do. It's not an either/or thing. You try to incorporate both metaphysical and medical treatment."
Brooks runs monthly AIDS Update seminars entitled "Being-Well-Being-Gay." They are AIDS programs that incorporate news of the latest medical advances with the disease as well as meditation programs, nutritional advice, and testimony from support groups for AIDS patients and from those patients who are having successful remissions. Most of the 40 to 60 AIDS patients he treats are among the 125 to 150 people who attend. The number increases each month.
"A good physician understands the importance of positive thinking." Brooks added. "It's not a matter of just giving drugs, nor a matter of hocus-pocus. The patient's will and desire to be well is a very important part."
In June, 1983, Louie Nassaney, 30, began treatment at UCLA Medical Center for Kaposi's sarcoma, a form of skin cancer that strikes AIDS patients and was considered rare in the United States until AIDS was discovered in 1981. The other most common disease that afflicts patients with AIDS is Pneumocystis carinii, a rare pneumonia.
Unlike Nassaney, Tom Proctor has had no formalized medical treatment--no drugs, no radiation--for his Kaposi's sarcoma, diagnosed along with AIDS a week after he completed the San Francisco Marathon in August, 1984.
"Actually, I never really felt bad, but I had this purple spot on my face when I was running the marathon," said Proctor. Proctor was one of Brooks' first AIDS patients and later was tested at Los Angeles County-USC Medical Center.
"The doctors there decided not to treat me with drugs because I had no real serious bout with it and my T cell count (cells that assist the body in warding off disease) was fairly high," Proctor continued. "I decided on a natural approach."
Proctor changed his diet regimen--no sugar, no caffeine, no alcohol, natural carbohydrates and lots of fresh vegetables and fruits--increased his daily running program and workouts at a gym and took acupuncture treatments twice a week "to lessen stress and promote the healing process."
He also began meditating and practicing positive imagery.
"I spent time doing mirror work," he said. "You look in the mirror and just be with yourself. Not look critically, but create a positive mental set. Believe this is just a terrific day and get real firm about it. You have to be that firm and that committed.
"It's very easy to die from AIDS," said Proctor. "It takes a lot of commitment and work not to. It's very easy to start slipping when you wake up day after day with AIDS. But this is one of the things that is now my mission--to keep inspiring people with hope and positive thoughts. To heal myself and pass it on to others."
Nassaney, on the other hand, had undergone seven months of treatment with Interferon at UCLA Medical Center after he was first diagnosed as having AIDS. But the Kaposi's lesion on his leg was still there and his doctor Dr. Ronald Mitsuyasu, a UCLA hematologist and oncologist, stopped the Interferon treatments.
Mitsuyasu told Nassaney they could try chemotherapy or radiation, but Nassaney refused both.
"If you'd seen me, you wouldn't have believed it," Nassaney said recently at his Van Nuys home. "I lost all my hair, I couldn't smile. I slept 15 hours a day or more and was so depressed. I had no energy at all and had a fever all the time. I never lost my appetite, but food just didn't taste good. When you're not doing anything, the body just falls apart."
Trauma of Telling Parents
Nassaney already had endured the trauma of telling his parents and brothers and sister that he was gay and that he had AIDS. He was insistent on remaining away from the family and living with his roommates. But by Thanksgiving of 1983, he had changed his mind.
"I asked God whatever decision I make, let it be the right one," explained Nassaney. "I moved back home. My family was totally supportive. We cried and hugged and gave each other loving, healing thoughts. That's the reason I'm standing here today."
Louie Nassaney embarked on a fitness and nutrition and vitamin program in December of 1983. He
also got into holistic healing and metaphysics when a friend gave him a tape to listen to. It is called "AIDS: A Positive Approach," done by metaphysical counselor Louise Hay, based in Santa Monica, but well known for her holistic work with AIDS patients across the United States.
Nassaney began holistic treatment and meditation therapy with Hay and went back to a gym to begin daily workouts on building up his body.
Today, Nassaney is a role model and inspiration to all AIDS patients he meets. His Kaposi's sarcoma is in complete remission. He has had no new lesions since October, 1984, and a biopsy of his earlier lesion showed dead scar tissue. Results of a recent immunology study of his blood are not yet available, but Nassaney believes he has gotten rid of AIDS altogether.
He is in such good physical shape that he placed fourth in the Superman contest in September at the Hollywood Palladium, an annual bodybuilding/beauty contest for gay men. He now works with Louise Hay in counseling other AIDS patients, gives talks at her seminars for AIDS patients and friends of AIDS patients.
Last week, Nassaney spoke to an AIDS group at UC Irvine, and later under Hay's guidance, met with 20 AIDS patients in San Diego to help them start an AIDS seminar/meditation group.
Tom Proctor, who also works with Hay, has begun producing his own alternative healing workshops for AIDS patients, with his next one scheduled for January. Speakers come to discuss acupuncture, nutrition and detoxification of the body, meditation and imagery. He also has just applied for the job of recreation service administrator for the city of West Hollywood.
"I tell people we're PWAs," Nassaney said with a smile. "That's Person With AIDS. We don't like the word victim. It's too negative. You have to be positive and learn to love yourself. When your ego is positive, everything else is positive, too. I believe the reason why I'm on the planet is that I have energy inside of me that can be communicated."
This week, Nassaney went to New York to make an appearance on the "Today" show and to talk with a publisher about a book contract. He hopes to go skiing at Mammoth as soon as he gets back to California.
At UCLA, Dr. Ron Mitsuyasu can only speculate on Nassaney's remission of Kaposi's.
"Nobody knows why," he said. "If we did, we'd want to get other patients on it. But there is so much we don't know about AIDS. People who have minimal Kaposi's to begin with have responded to Interferon. Louie is not the only one in complete remission. We have seen what we call 'complete responders' to Interferon for up to 2 1/2 years. Unfortunately, very few. But they're out there. Most don't talk too much about it because they've gone back to their jobs and their lives."
Mitsuyasu estimates that a total of about 550 AIDS patients have been treated at UCLA. USC Medical Center representatives report that their physicians have treated more than 600 AIDS patients.
"We have no way of knowing whether the complete responders will relapse," said Mitsuyasu. "It's anyone's guess. But we get criticism from a scientific standpoint because we haven't done a controlled study. That's very difficult to do with a disease that is normally fatal.
"Some people may say that it may be that the viral infection may have been less with Louie and the other complete responders and somewhat reversable. Some say that Louie has developed some type of inhibitory virus. There's no hard data, but we're investigating
that as well."
Mitsuyasu talked about Nassaney's positive approach to his disease and his life with AIDS.
"A positive attitude is critical when dealing with any kind of serious disease," he said. "Certainly, as I tell all my patients, with AIDS, with cancer, they do, in fact, need a good mental attitude. A good attitude is not enough if the disease does not respond to treatment.
"But there may be a combination of factors here," the UCLA doctor added. "There is a lot we don't know about Interferon, of the correlation of AIDS and the immune system and the psyche. There's probably something there in terms of all of them. And it's important to point out that there are people doing well with this disease. That patients with a good positive attitude can do something."
Louise Hay was standing at the door of the Athletic Club on Santa Monica Boulevard one recent evening, greeting people arriving for her evening workshop. There would be chanting, meditation, a healing circle, and talks by patients with AIDS.
Since February when Hay started the AIDS evenings with six men with AIDS, her Los Angeles group has grown to almost 200. "There are lovers, nurses, hospice workers, relatives, as well as those with AIDS," she said. "It just keeps growing and growing."
People attending the evening "gathering," as Hay likes to call it, are asked to give a small donation at the door.
Hay and her assistant counselor Gisela Miller have given numerous AIDS seminars in the past few months in Boston, Houston, Chicago, New York, and other large U.S. cities. They recently gave an AIDS workshop in San Francisco for 450 people; another in a Greenwich Village church in New York for 350. For another two-day workshop in New York, Hay and Miller turned down many applicants because they only had a capacity in the rented room for 110 people.
"From what I hear," Tom Proctor said at the gathering. "Los Angeles is in the forefront of this (the alternative healing approach to AIDS). People are asking me, 'Hey, what are you guys doing out there?' "
A young man named Ron, who said he had recently moved to Los Angeles from New York, confirmed
"You go to New York gyms and there is grievous, dark foreboding talk about this (AIDS). There is so much grieving going on that they won't let go of the sorrow . . . There is a different concept of total wellness here."
Indeed, Hay is so busy with her AIDS group sessions here and trying to meet requests coming in from cities across the country to set up similar AIDS groups that she said she has stopped giving individual metaphysical counseling.
For this particular gathering, two young men from Portland, Ore., had flown down to attend. One is an AIDS patient; the other has been diagnosed as an ARC (AIDS related complex, meaning he has AIDS symptoms, but not the full-blown disease) patient.
"We don't have anything like this," said Jim Case. "There is so much devastation in Portland. People fear and then they die. We want to try to get Louise to come up there. I know 100 people in Portland who want her to come and help us."
Said Hay: "I think we need to get out to the public that not everybody with AIDS has died. I think the fear is doing a great deal of damage. With our approach, we are treating it (AIDS) as though it is cancer, and want to help people realize that the mental problems that they have create problems in their bodies and their lives.
"Acupuncture has worked for some AIDS patients, a macrobiotic diet seems to be good, nutritional programs, and meditation is very helpful. We want to have people looking at themselves in a different way. Teaching them to love themselves. The only thing I teach anybody is how to love themselves. A lot of people have a lot of hatred for themselves . . .
"I do not heal anyone. I am a channel for giving people information so they can heal themselves. The body can heal itself, it is always working toward healing, but what gets in the way are attitudes and belief systems. They have to open up things in the universe. I know it sounds simplistic, but I've been working with people this way for years."
Hay said that eight years ago doctors in New York said she had cervical cancer and had to have an operation.
"I began my studies at the Church of Religious Science in New York City many years ago," Hay explained. "It's a metaphysical healing church. I became a licensed practictioner and a minister. I have since studied many other modalities. When they said I had cancer, I realized I was being given the opportunity to practice on myself what I had been trying to teach other people. I worked with mental practitioners and a nutritionist and on myself. Within six months I had no more cancer and the doctors confirmed it."
"There is no time to lie anymore," said Stephen Stucker, an actor, musician and comedian who has had AIDS for five years. "I'm way over the time limit at more than five years. As far as I'm concerned my life is an open book. I have no secrets. I'll get on TV and talk about it.
"But this five years have been so hard on my friends and family. My parents are beautiful, and my sister, too. They have been so supportive and they don't give up. But they suffer twice as much. They don't know what to do because they're afraid."
Stucker, who was diagnosed as having "every kind of cancer symptom in 1979" believes he actually had AIDS then, but no one knew what it was. "I had blood transfusions in San Francisco when I had an appendectomy. Then, when I was living in New York, it was a very fast life. The parties, the needles. I was the fool that did that. I was using a lot of drugs. I was sick a long time."
Then Stucker went to a doctor in New York for tests. He remembers the exact date his physician called to tell him he had Kaposi's sarcoma. "It was 10 after 4 on July 12, 1984, when the actual diagnosis of AIDS and Kaposi's came. Since then I've had Kaposi's and then Pneumocystis twice. I'm still here and I refuse to give up. You can't just roll over and quit."
Stucker, 36, has been treated by Dr. Nathan Green at Valley Presbyterian Hospital and also by Dr. Robert Brooks. He has had Interferon, as well as radiation. He also has changed his diet, stopped eating red meat, takes vitamins and quit smoking.
He goes to the AIDS seminars sponsored by Brooks, and to meetings with Hay. He meets regularly with Nassaney, Proctor, Andy Davi and Bob Rogosuch, all longtime AIDS patients.
Rogosuch, who holds the meetings each Sunday at his home, has had AIDS for three years; Davi contracted AIDS in September, 1983, two months after his late roommate, Bill Bader, died of AIDS that July.
"I can't do a normal job," said Stucker. "But I can play my music and entertain people. Sometimes I have to take a day and just rest. AIDS is a dangerous disease and you have to take care of yourself."
Stucker currently is writing a pilot for a TV show and writes songs for Brooks' AIDS Update seminars.
"People need to do whatever they can, chant, read the Psalms, meditate to reach that voice inside and get in touch with it. Then they'll know what to do. I do believe we have control over our lives. You take it one day at a time. You find that higher force that's in all of us, and you can find that force to help us heal ourselves.
"It's time that people knew that there are people who have had this as long as I have," Stucker added. "Yes, I have lost 40 friends now (to AIDS). There are three people a day dying in New York, San Francisco and L.A. But you've got look look at the positive side. It doesn't kill everybody. You've got to live. Life is for the living. Let's hear some good news."