I posted this to inform a French forum about inspiring early "long term non-progressors"
Louie had reached a precipice between life and death in his struggle with the dread disease AIDS.
He abandoned reliance upon the medical regime that gave him no hope of recovery, but whose drugs had sent his body into a decline toward death.
He developed SELF-reliance. He found inspiration in his religion, new strength in exercise and sports, and mentors in the Holistic Health movement who showed him new paths and healing modalities. He was victorious over the disease.
His driving motivations are totally healing himself and helping others to discover more health and life.
Louie has a passion to live, free of disease; a passion to live on a higher level; a passion to share his hard-won knowledge with others, especially Persons with AIDS.
He is a spokesman for the survivors - Persons Who Have Conquered AIDS.
There was a time - and it wasn't very long ago - when I thought I had everything. I was a member of a close-knit, loving family. I have a mom and dad, two brothers and two sisters. I worked in our family business, and it gave me an excellent income. A beautiful home, a fabulous car, fine clothes, friends, an active social life, lots of recreational drugs - all were mine. I had everything the media tell us to want-the things that are supposed to bring fulfillment and joy. How could it be, then, that I was not happy?
I had never told my family that I was gay, but I indulged in relationship after relationship, and between them, I played around. I suppose, according to some people's standards I was promiscuous, but I didn't think so at the time. My sex life was the norm according to my lifestyle. I believed I had many friends; they and I all lived the same way. If a relationship didn't satisfy me, I simply moved on to the next man. I didn't think about my affairs more than superficially. It was all part of being gay; I was merely doing what everyone else was doing and I didn't see it as a problem. After all, didn't I have everything? I never thought seriously about my own opinion of myself. It wasn't an issue. More important was what kind of impression I made on others, and that impression became my opinion of myself.
It was inevitable as I grew older: I realized that the imprint gays made on society was negative. Then I began to question my own standards. My self-imposed secrecy as to my lifestyle fostered a lack of self-love. The guilt, blame and shame grew daily subliminally; I never gave it a conscious thought. At the time I believed I was healthy, and yet I was abusing my body with a junk food diet. My parents ate the same way, so I was the second generation on this deficient, harmful diet. I was as careless about my health as I was about my feelings and the feelings of others. I believe this lifestyle contributed to a weakened immune system and was, in part, the reason that I eventually succumbed to AIDS.
In May of 1983, Dr. John Medved, in private practice in Santa Monica, diagnosed me as having Kaposi's sarcoma and AIDS. Dr. Medved sent me to UCLA and I was seen by Dr. Run Mitsuyasu. The blood tests showed a lowered immune system. The doctors saw a spot, and did a biopsy on it. It was definite, there was no mistake... I had AIDS.
I turned to my family. The same day I was diagnosed I told my folks: "I am gay, and I have AIDS." Each member of my family in turn expressed his or her love for me and a desire to support me in all ways. My family has been my best support throughout this crisis. This disease has brought us even closer and my confidence in my family is total. I believe I am most fortunate to have a family willing to accept me and love me unconditionally. The love my family gave me helped me to learn to love myself, and that is the beginning of healing. Throughout this entire experience, my family supported me in every way. I moved in with them. I didn't have to worry about money.
Dr. Mitsuyasu arranged for me to receive the traditional treatment for AIDS. I was given a choice of chemotherapy or the drug Interferon.
I was encouraged to take part in a government program. Its purpose was to test the effects of the new drug Interferon on AIDS. I was told the drug was very expensive but I could get it free on this program. I thought if I didn't participate, I would definitely die, and soon. I was told the drug might save my life and that it was the only hope left to me. So gratefully, I agreed to allow the doctors to experiment on me with Interferon.
There was no reference to diet - and I was not given counseling for the terrible emotional stress I endured. I suffered from depression, anger, and fear. I had nightmares. I thought I was dying, and no positive thoughts concerning life came to my mind. For seven months I was hospitalized under the Interferon treatment. I was bedridden, unable to move about. My vision became blurred and got steadily worse. I couldn't hear well. My sense of touch was numbed. I lost my sense of taste and almost lost my sense of smell. I experienced a loss of coordination and found even walking extremely difficult. My hair fell out. I was taking sixteen to twenty-four Tylenol tablets a day and sleeping twelve to fifteen hours a day. I admit I had thoughts of suicide to avoid the pain and suffering, but I am a Roman Catholic, so suicide was really out of the question for me. My waking moments were spent in pain, fear, anger, and total depression. I was completely demoralized.
After seven months of hospital treatment, the doctors decided to take me off the drug Interferon. It wasn't working for me. I thought it was the only hope, and when it didn't work, I believed all hope was lost, that a death sentence had been issued.
The medical doctors advised me to start chemotherapy and radiation and said that possibly other experimental drugs might be helpful. But, they added, the prognosis was not good. It was at this point that I took control of my body. I decided that I didn't want to die full of drugs, chemicals and radiation. If I were going to die, let my death be natural. I told the doctors I would not submit to the treatment they advised. It was January, 1984, and I have not returned to any of those treatments, to any hospital or drugs.
As with most people facing death, my religion became very important to me. I attended mass daily and was in constant prayer. I guess I hadn't really given up on myself, because I prayed daily for guidance on how to live each day and find a path to health. My religion has been a source of great comfort and peace. I am grateful.
I was amazed to find that within the first month of freedom from the drug Interferon, I began to feel somewhat better. It was during the second month of freedom from the drug that my body began to wake up. About that time, a friend offered to give me a body massage. He was a very good friend to be willing to massage the body of a person with AIDS. More than that, while he massaged my body, he began to talk to me about letting go of the toxins within. He told me that the seven months I had been in the hospital the toxins had been sitting along my bones and arteries, so to speak. He spoke of meditation and relaxation, positive imagery and the healing of the spirit. I have always been a positive person, and as I heard these things, I began to learn to live one day at a time. I began to be grateful for each day of life I was being given. Positive information was beginning to come to me. Someone brought me a flyer from Louise Hay about her book AIDS: A Positive Approach. It was the first time I had heard that I could get well. It was all I needed to hear..
Louise Hay teaches meditation, relaxation, and healing imagery. She also emphasizes the need for a correct diet. I found a good nutritionist and began to get my diet on the right track. For the first time in my life, I began to eat correctly. I became very conscious of nutrition as a source of health. I believe it was a reflection of my self-love that I began to care, finally, about how I treated my body. The days of alcohol, cocaine, marijuana, and quaaludes were over forever. Instead of yielding to death, I began to explore the possibility of life. Each new understanding opened another door. I discovered the benefits of vitamin therapy, acupuncture, colonics, carrot juice, garlic and fasting. I focused on methods of stimulating my immune system.
The healing didn't happen all at once. I found I had to seek out the sources
of health and become my own doctor.
Louise Hay emphasizes the absolute need to rid one's life of all negative stress, which creates illness. If we are to regain our health it is absolutely necessary to rid our lives of such stress. But how could I live with a supposedly terminal illness and not have stress in my life? That seemed impossible. I took the approach that I would live each day given to me to the fullest. Yes, there were times when I couldn't sustain the positive attitude; I suffered fear and depression, and the nightmares returned. I worked on emphasizing the positives and working through the negatives by anticipating days of joy and pleasure and the renewed health coming to me.
It was during this time that I found it necessary to free myself from all relationships not supportive and positive. My old friends had reacted predictably to my illness. They were frightened. They had dropped me like a stone, sol did the same with them. I began to surround myself with positive and supportive people who understood my constant efforts to improve my health. To be with positive-thinking people is now absolutely essential to my life. The lifestyle of my "old" friends would have killed me, and I would not die for their sakes.
I began to change-mentally, emotionally, and spiritually. I started on the journey to true self-love. Mentally, I try to keep my thoughts under control; I express love and kindness to others as well as to myself.
Physically, I began to do all I could to stimulate my immune system. I worked out at a gym. I took up body building, aerobics, racquetball and swimming. Then I added body surfing and bicycling. When you physically stimulate the immune system, it produces a corresponding mental and spiritual awakening and the endorphins within become activated. Physical exercise for me was essential.
I work hard at loving people. I refuse to indulge in thoughts of criticism, fear, anger, blame, shame, and guilt. I let people know that if they have such thoughts and emotions, they can choose another way to think and feel. It's not wrong to have negative thoughts, but it is wrong to get stuck in them. It is necessary to work through negative thinking in order to become free from it. People can choose love, joy, pleasure, and health. Both the negative and the positive always exist. It is our individual decision which to choose for our lives. This applies to everyone, not only to people who are facing death. A positive attitude is the foundation of healing spiritually, physically, and mentally.
People hear the word "healing" and they expect to see the lesions or other manifestations disappear immediately. But that isn't the point. It is not the right goal. A higher quality of life on every level is to be desired-not just saving our lives in order to continue to live destructively. On any particular day, if you feel good, take advantage of it. Give thanks, exercise, see loving friends, exult in the good days in every way you know. People with a death-expectant attitude, people who are unwilling to change their lifestyles, or make any effort--cannot be victorious over AIDS. People who succumb to the threat of death like to say they are "going to die with dignity." I say live with dignity. Life is for the living.
As to the disease itself: in my case it was sexually transmitted. I believe my immune system was weak to begin with. My lifestyle, eating habits, and mental attitude all contributed to a low level of health. I believed I was a healthy person then, but now I know that my immune system was being weakened in many ways. My uncaring, unfeeling, unknowing lifestyle was one of them.
At the age of twenty-one, I acquired sexually transmitted hepatitis. I was not given any drugs, but merely told to go home and rest. I don't think I took the illness seriously and did not take time to see it totally healed. I spent two weeks in bed and then returned to my former lifestyle which included cocaine, quaaludes, some marijuana and alcohol. I believe my lifestyle and mental attitude contributed to the disease of AIDS.
I don't believe that AIDS is a "gay" disease. I believe it has gone through the gay community, but is not limited to nor did it originate in the gay community.
I have heard the rumor that the virus was introduced into society intentionally, directed toward those people the U.S. society feels the most hostility towards-the gay community and the non-white community. I certainly hope it isn't true. It could be true, but that is the kind of rumor I refuse to dwell on.
Each of us is an individual, mentally, spiritually, and physically. Because the medical community refuses to consider any modality other than drug therapy to heal AIDS, it is necessary for each of us to take control of his own body and seek the methods that work for us. There are those who respond to radiation, chemotherapy, and drugs. I did not. But you may. Realize that if what you are doing isn't working for you, there are many, many other things you can do to help yourself.
- But it won't be handed to you. You have to get out there and find out what will work for you. It is essential that you become absolutely honest with yourself. You must consider seriously how far you are willing to go to regain your health. As for me, I will go all the way. I found in myself a strength where I was 100% willing to take whatever steps were necessary to live even one more day.
I was and am willing to change myself and my lifestyle in whatever way good health requires. This means getting rid of the poisons in my life-mental, physical, and emotional poisons. It means a change in priorities-a total change in diet and daily activities. I am willing and I will try - for the sake of living another day. Being willing to do that, gives me a chance to live. That was and is my attitude toward myself.
I believe that there is no help for those with a poor attitude. You must believe in what you are doing-believe that it will work. That belief is of the utmost importance. Everyday, every hour, every minute of my life I am reaching for a quality of life that I did not know existed before AIDS. Quality, not quantity, is the name of this game. The most important thing I could say to a person with AIDS is: if you feel good in the morning, get out there and take advantage of it. Be grateful and live completely today. Stimulate your life, and you will stimulate your mind, body, and your immune system.
When we are young, we usually do not consider dying. Those thoughts are for the old ones whose lives have been lived, and they are ready. When a young person is surprised by the possibility of an early death-when tomorrow becomes a dream-today takes on another dimension.
Wouldn't it be wonderful if everyone on this planet could find out what many people with AIDS have been forced to learn? Why do we have to face death before we learn about the value of life? We must learn to live truly in the moment. We must learn to live for each minute, hour, and day with gratitude and take full advantage of every good feeling and good time the world has to offer. We should wake up each morning grateful for another day, and if we feel good, run to take advantage of all the joys of life. Hurry up and learn to give love and be kind to others and seek the God within us all. I have learned to be grateful for the gift of this disease. Each day I live I feel like a "winner." I have truly found a great joy in life. This disease has been a gift of life to me. I know that some people find that difficult to believe- but it is true, nevertheless. I have found a new awareness, and how to live on higher levels, with love, joy, and expectancy.
In one month, several friends died of AIDS. I became depressed in my grief. I began to slack off on my diet, and stopped going to the gym to work out. I allowed my thinking to go negative. My whole regimen began to slip, and the disease attacked me again. The symptoms began to return. I had to get hold of myself quickly and return to my health generating activities. I did so, and the disease retreated. I know now that it will be necessary for me to live all my days doing battle against this disease in the sense that I cannot ever return to my former lifestyle. I cannot ever allow depression, fear, blame, shame, and guilt to seep into my heart, mind, and body. I must be ever alert and on guard.
A great thinker has written, "Stand porter at the door of thought." I am willing to do all I can to support life and I will not willingly succumb again to the negative thoughts and actions that will indeed kill me. If I don't eat properly and think properly and constantly do all that I can to stimulate my immune system, I will be vulnerable to attack. I am not talking about a cure-I am talking about a new lifestyle.
I hope this disease will cause a change in the medical world's approach to healing. Dr. Bernie Siegel's book, Love, Medicine & Miracles is a beginning. It shows there are some medical doctors who are beginning to see the light. It seems obvious that drugs do not heal everything. A new method for coping must be developed. It is necessary to take a more complete look at the art of healing and our concepts of man. The body is matter, that's true-but we are not just bodies - we are also mental, emotional and spiritual beings.
Wouldn't it be intelligent of the medical community to take a wider look at healing and include in its art the methods now considered "alternative?" At this point it is necessary for persons with AIDS to doctor themselves. The medical world has closed its mind to anything other than drugs. Yet, the natural, "alternative" methods are very old-and it seems to me that if a method is very old - it has lasted because IT WORKS!
Must the medical world be faced with a plague before it can change its beliefs regarding the various ways to heal? Must a human being be confronted with death before he/she can open the mind to a change in lifestyle?
Healing the spirit is the beginning of healing the body. Right thinking can bring about healing.
How can one's health not be affected by diet? How long must we wait, and how many of us will suffer and die before crack is made in the monolithic establishment-with its current practices of drugs, radiation, and chemotherapy? The responsibility falls on each one of us.
We are in the forefront of this change in healing practices. The burden of responsibility lies with each of us infected individuals or the healthy. We must seek out true healing and insist that it be practiced in all its aspects. AIDS could have a positive effect on the world if the medical complex would open its doors to other healing methods and use drugs only where they really work-in emergency situations to save lives.
Because of my changes in thinking, feeling, and acting, I have discovered I am able to make a total commitment. I have been in a Personal relationship for some time. We are totally honest with each other; my lover is familiar with all aspects of my illness. We practice "safe sex." Yet I don't really know what "safe" sex is. I don't honestly believe condoms are safe. I'm told they are ninety percent safe, but there is that questionable ten percent. We just don't know. For myself, I take any and all precautions to protect my lover. We enjoy sex, but sex is not the foundation of our relationship - friendship is.
I keep myself active and feel well and strong. But I know that I must be extremely careful. Because I had cancer (K.S. is a form of cancer), I must watch my diet, live an unstressed life, and carry on my entire lifestyle in a way that is not disease inducing but is health promoting. I feel healthy, but some K.S. lesions remain (as of May, I988).
As to my future-I am writing a book, and books as you know, can take years to complete. I refuse to give any urgency or stress to this project, however, and will take my time to do it right. But the book isn't my only project. I no longer work from eight to five. I spend time learning about this disease and also developing myself spiritually.
The most fulfilling thing for me is to be able to help others--especially Persons With AIDS -with what I have learned. I have always enjoyed teaching and lecturing helping to open doors to the possibilities of life for another person.
There are only a few leaders in the gay community who are able to speak from experience concerning this killing disease. The number will no doubt grow, but in the meantime, I have the feeling this is my path. I feel responsible to my fellows to get as much information as I can to those who still suffer. It is a very rewarding way of life.
Today is all I have and I intend to make the most of it. Tomorrow is still a dream, and it will take care of itself.
Note: Louie Nassaney appeared on The Oprah Winfrey Show, April 5, I988, and gave his story. He also was featured in "Surviving Is What I Do", in Time magazine, May 2, I988.
Chapter from “They Conquered Aids! True life adventures. From Self-reliance,
thru Inspiration, into Transformation”.
By Scott J. Gregory, O.M.D. and Bianca Leonardo, N.M.D.
Tree of Life publications © 1989
Louie Nassaney published "I Am Not a Victim: One Man's Triumph over Fear