My Passage Through AIDS : A Prominent Los Angeles Businessman Reflects on His Life and His Fate

My world came to an end in the San Jose air terminal on Friday, Feb. 27.

I had been in the San Jose area on a two-day business trip, which like most of my out-of-town visits consisted of speaking engagements. While waiting for my return flight to Los Angeles, I made a phone call.

A week earlier my doctor had convinced me that I should have a test for the human immuno-deficiency virus. Like other men, I had initially rejected the idea. I suppose, like many others, I was avoiding the information that I already suspected. That Friday, my call was to find out the test results. The doctor informed me they were positive.

I knew then that I had AIDS.

With almost clinical detachment, I made an appointment to visit him early the following week. I had been having difficulty using my left hand, and for several weeks had assumed it was due to a possible pulled shoulder muscle. At my doctor’s office at the end of that visit, I almost casually mentioned the problem.

A Brain Scan

After several questions, he said the difficulty could be an indication of a serious problem; it seemed there might be brain damage as a result of the now-active AIDS virus in my body. Within minutes, a magnetic resonance scan of my brain was scheduled for the next afternoon.

The scan consisted of placing my head and shoulders inside a tubelike device that seemed to belong on a “Star Trek� movie set. Within a day it would indicate that there was a lesion on the right side of my brain. The lesion, the doctor said, could be the result of a tumor or, more probably, a direct attack by the AIDS virus on my brain. His coolly efficient explanation transmitted a subconscious emotional message: I had a terminal condition. My future consisted of certain death.

I was to be hospitalized for a complete diagnosis. Much to my doctor’s displeasure, I delayed entering the hospital while I turned over my client commitments to an associate and visited my attorney to arrange matters should I not leave the hospital alive. On the day I left home, I took a final look at my budding liquidambar tree and thought it highly probable I would never see it with all of its leaves.

I had not been in a hospital for more than 50 years, but it was not unpleasant. Still, the multitude of tests did little to change my outlook. They indicated that the brain lesion was due to a toxoplasmosis infection. This protozoan is usually present in all of us, but our immune systems keep it in check. In my case, the infection in my brain was slowly taking away my ability to use my left hand and arm. Dressing and daily living became a one-handed exercise.

On the day I was to leave the hospital, I had my first seizure. My arm and hand jumped around for about 15 seconds as a result of “short circuit� signals from the infected area of the brain. I was terrified.

I was told that this could become a common event (it did) and I received my first capsule of the drug Dilantin. I left the hospital convinced that my days among the living were indeed numbered. The doctors were surprised I was so calm, but I did not feel cheated and could therefore face my impending demise calmly. I resolved to get on with it, deciding two things: First, I most likely would not live beyond the end of the year; second, when I thought it was time to die, I would merely get into bed and stay there.

These feelings and an all-encompassing resignation remained with me for several weeks. I was calm in the face of an accepted certainty. I also decided I would no longer be able to work. For one thing, I couldn’t bear the thought of having a seizure in front of a group in the middle of a lecture. But I also felt I would be rejected when word got out that I had AIDS. I was sure most of my clients would be appalled at learning about my choice of life style.

Once I decided to stop work, my feelings took two directions at once. First, I discovered I had lost self-worth; indeed, I found I had little personal identity outside my work life. Second, I lost interest in the outside world. As a futurist and social observer, I had spent most of my time watching and reading about change. Now, I found I had empty days. To fill the time, I began to sleep all day, and all night. I would stare at nothing on the ceiling for many hours. Everything, including reading, became too much of an effort. Since my days were numbered, nothing seemed worthwhile.

In a way, it was all very comfortable; I was well cared for at home. In retrospect, the frightening fact was, I was very content doing nothing. And since I had a relatively strong personality, there was almost no one to challenge my deep feeling of resignation. It seemed the civilized approach to my remaining life.

During this time, the only trips I took outside my home were to my doctors for blood tests. My medication routine had been established. I took pills seven times a day and adjusted to sleeping in small packets of time. I also attempted to fulfill a few out-of-town trips. That activity ended in emotional disaster when I had seizures aboard aircraft and once while passing through security at the Oakland airport.

All of this made my continued resignation to dying very easy.

Then one day while talking with a friend, I asked again if he didn’t think I had become too resigned too easily. Together we explored this thought. I became convinced I had given up too quickly, even if it were an obvious course of action. From that point on I began to explore the alternative.

I had been receiving counseling to stabilize my emotional state, even though I felt I was stable without help. To my surprise I found, upon reflection, that my inner needs were spiritual or metaphysical. When I mentioned this to more friends, I found that during illness they had reached the same conclusions in their own lives. They suggested I read several books, including one written by Louise L. Hay, a metaphysical healer who had been working successfully with cancer and AIDS patients. Her Wednesday night meetings in Plummer Park in West Hollywood had become legends in the gay community.

I acquired several of her tapes, purchased other meditation tapes at the Bodhi Tree bookstore on Melrose Avenue, and played them several times a day. Slowly I began to understand that my future was in my own hands--actually, mind is a better word.

It’s strange when you consider that, as a futurist, I told my clients: “If you can dream it, you can do it.� Louise Hay reminded me that each of us has the capacity to invent tomorrow by the thoughts we have today.

Through the tapes, I began to believe I could play a major role in healing myself.

Trip to the Ocean

I also developed an unexplained but insatiable urge to visit the ocean. The need was so real that my lover, Jim Hill, and I went to stay in a Laguna Beach hotel directly overlooking the surf. As I sat in a lounge chair staring down at the water, the pattern of the waves slowly began to relax my mind and I realized why I had wanted to come to the sea. My mind began to float and I recalled a long-forgotten thought from early childhood: how abandoned I had felt as an only child who was separated from his parents at a young age. This feeling of abandonment would be repeated in my teen years and as an adult with two relationships that failed.

My overpowering fear, now as a man with AIDS, was that I would once again be abandoned. This sudden, ocean-induced awareness was a shock. I hadn’t realized I thought in those terms; at least I couldn’t consciously recall that I had. I returned home resolved to learn more about myself, and healing myself.

The attempt to reach my inner mind and understand its abilities and effects on my life became a challenge. Indeed, it would prove to be the biggest challenge I had ever encountered. To my amazement, many of my friends had also attempted to mentally influence their health and well-being. They suggested a considerable number of books on the self-healing process.

As I reached deep inside myself for understanding and direction, there were many moments of feelings of success. There were many more moments of failure. But I continued on, reminding myself that for many decades, I had shaped my work career through personal determination--and been successful at it.

A Different Person

It became clear, then, that whoever I became at the end of my spiritual odyssey, I would be far different from the person first diagnosed with AIDS in February. It was also obvious that it was time for me to make a passage or transition in my life. I felt that having AIDS could be turned into a positive experience.

During the months since that initial diagnosis, I found, for the first time in my life, that I cried easily. I cried not out of fear but as an emotional expression, an outlet for pent-up anger and frustration, and as a response to the kindness of my friends.

I never thought so many people, including business associates and clients, would come forward so openly expressing their love for me. Dozens of callers expressed love and hope and encouragement. To date, no one has been appalled by the knowledge of my preferred life style of the past 20 years. I have deeply felt the love of others who I never thought would call and say “We love you.� This all created a sadness in me because I had never understood how they felt about me.

With that came a frequently overpowering feeling of loneliness; very often it felt as if I were all alone in a strange dark place. And I developed an almost-desperate need to be hugged and held close, as if I were a small child.

It was a time of new feelings that were almost beyond my control. But slowly I began to realize that no matter how uncertain my life seemed, there could be a future. I could still exercise some control over my existence.

The last few months have involved the steady loss of my ability to move my left arm, use my left hand and use my left leg. Over a period of 120 days, I watched my disability grow until I could no longer move freely under normal circumstances. I progressively became more crippled and more useless. Standing up became a high risk; I fell on objects around my home. Canes were useless, and manipulating a wheelchair became a one-armed event.

Needing Help at Home

I was being transformed from an independent person into someone who could no longer walk alone, someone who needed help to shower and to get to bed at night. The massive change in so short a time left me confused and surprised at my feelings; they seemed to belong to someone I didn’t know, a new individual I was not prepared to either understand or control. Even the closet full of executive suits now seemed to belong to someone else.

Frequently, I would wake in the morning still believing I could hop out of bed and jump into the shower. Obviously, I had not adjusted to my new body and I wondered how long memories of the past would seem to represent a nonexisting present reality. I wondered when the present reality would dissolve the memories and actions of more than 50 years.

AIDS is perceived as altering the life of one person. This is not the whole truth. As the patient becomes slowly dependent upon someone else, finally needing help all day, all week, the disease slowly destroys the quality of life for two people. The care-giver of the AIDS patient is also held hostage by the disease.

The sickness is relentless, trapping two or more people in a round of simple but necessary tasks. If there is one thing worse than having AIDS, it is watching and caring for the person who has it. The significant other can do little but wonder, “How long will this go on?� The patient watches while the life of the care-giver becomes less in the name of love and more a self-imposed duty. It is difficult to say who is the victim and who hurts the most. Joy seems to slowly vanish in the eyes of both. Life becomes increasingly restrictive; the disease dominates every discussion and action. Freedom for both vanishes.

The overriding challenge is how I can be less of a burden on my care-giver. Accepting care is something that almost must be learned. Understanding limitations also must be learned. Expectations must be adjusted to a new reality.

Doctors Confused by Disease

AIDS is a very new disease and most doctors are very confused about its treatment. Most have not been trained generally to accept the patient as full partner in the healing process. The patient is seen as a mechanical device to be repaired; the tools are surgery and chemicals.

I don’t believe, however, that we have any choice but to take charge of our healing. The criteria for selecting a doctor should be: Will you accept me as a partner in my quest for wellness?

Doctors are especially insensitive to the effect of new drugs. The doctor’s challenge with an AIDS patient seems to be to keep you alive until a cure is discovered. Regretably, hospitals also go along with this, in their competitive attitude toward who has the largest market share of AIDS patients. The AIDS patient, with insurance, is clearly a cash cow. The AIDS patient is also today’s leper, the focal point of attitudes similar to those of 100 years ago.

Those attitudes, unfortunately, extend to corporate America as a whole. What we’re seeing in the AIDS crisis is a social destabilizer, an event that is changing the future of the world. Yet, most businesses do not have an AIDS policy; they treat it on a case-by-case basis. They view AIDS as a homosexual disease and pretend that no one on their staff could ever get it. They’re not facing up to it.

Over five months I have learned slowly how to help myself and take responsibility for my healing. By talking to others I have received information on therapies and drugs with which to fight the disease. How others cope with the challenge also gives me clues and direction in my own search for maintaining a civilized level of life.

Now, my preferred life of 54 years is gone. Even if I were to go into remission or be given a cure, that life is over. My concern with my spiritual needs and my metaphysical well-being is now central to my existence. I also empathize with terminally ill cancer patients and the helpless feelings of the elderly as they are forced to depend on others for their daily existence.

I’m not sure what I’ll be like when I complete this passage. But I do know I will be very different, able to accept my needs and the love of others.