Working with AIDS Patients
My work with AIDS patients started right at the beginning of the epidemic, totally unplanned and spontaneous, as all my work had proceeded in the previous two decades, if it were not already my whole life-style! In the early eighties, we knew very little about this peculiar disease. All we heard (and mainly from the West Coast gay community) was that new cases were diagnosed daily and that many of those young men were dying rather rapidly. There were no cases of homosexual women reported to have contracted the disease. No one knew much about the mode of transmission. The general public just started to become afraid of the upcoming news on radio and TV, but did not feel threatened because "it happened to others," people with whom they felt they had "very little in common anyway," as a former neighbor expressed it.
It all began early in 1981 when I received a phone call from a stranger who asked rather shyly if I would consider taking an AIDS patient to one of my five-day workshops. He seemed to doubt that he'd get an affirmative answer. "Naturally," I said. "We have never ever discriminated, and all terminally ill patients have always been welcome." We view these workshops as their last chance to put "their houses in order," to finish their "unfinished business," and to make peace with whomever they still had disagreements. We are also proud of our well-received pain management for dying patients, and we pride ourselves on the fact that most of our cancer patients die fully conscious and in peace, most often at home rather than in an institution. After I hung up, I started to think, "What if the other hundred participants in the workshop do not agree with my decision and simply take off?. What if they refuse to talk to him? To eat at the same table? There were a thousand questions. Did we need to have special eating utensils for him, or was it established that the disease was not contagious? Should we notify the workshop site to have a separate set of bedsheets, and to separate the laundry? God, there were so many things to consider and so little time left. I was glad, however, for the patient's initiative. He was obviously highly motivated and would surely "push many buttons" for the other participants, who could only benefit from his presence.
On a Monday, at noon, all 101 people showed up at the retreat. We shared our first lunch together in order to slowly get acquainted. Since I have no memory for names, I did not pay much attention when Bob introduced himself to me. I did not associate the person with the earlier phone call. What impressed me, however, in a rather shocking and, for me, unexpected manner, was his face. His nose was huge and purple. His face, neck, and arms were covered with purplish patches, which would later in the decade become synonymous with Kaposi's sarcoma, one of the most dreaded malignancies and often associated with AIDS. His visual appearance was almost repulsive at first. Being a physician, I was used to all sorts of horrible sights, both from working in the Dermatologic Hospital in Zurich with patients who had venereal disease (prior to penicillin!), and later on, in emergency rooms. I could not help, however, watching the faces of the less indoctrinated workshop participants, who most likely had never been in the company of such a person.
What occurred over the next few days would not only be an incredible lesson for me, but it set the tone for all our forthcoming workshops in the United States, Europe, Canada, New Zealand, and Australia. By Tuesday evening, after our AIDS patient had shared every meal so far sitting next to me, I noticed that I included in my prayer: "Please, Lord, let me have one single meal in an appetizing environment." I jolted up in an instant! Did I, Elisabeth, really say that in a prayer to the Lord, who was known to work with the lepers and who tried to set an example for all of us to share, to love, to heal? I have never in my life worked harder to get in touch with my own feelings of repulsion, my own concerns, my shame and guilt than I had that night! Thank God for my assistants, who were there when my physical stamina started to wear out from paying attention to 101 people for five days and five nights.
When Bob began to feel comfortable and started to share the nightmare of being a twenty-seven-year-old man who got sicker and sicker every week without knowing the cause of all these infections, everybody sat and listened to him. It was upon reading an obituary in a gay newspaper that it hit him like lightning that he, too, could be a victim of this still-quite-unknown disease. His illness progressed with unusual rapidity, but he, fortunately, had a friend who did the shopping for him -- and not just the shopping for the daily food, but also for more information. To the growing pile of pamphlets on his table were added every news clipping -- at a time when the news media regarded this new disease as a real "hot item." He went from shock to denial, from anger and rage to bargaining with God. There were days when he was so depressed he could neither eat nor sleep. The sores in his mouth and throat added to his discomfort. He blamed his inability to swallow as the cause of his extraordinary weight loss. He avoided his family out of fear of their reaction and started to isolate himself totally.
What were once pleasures became sad reminders of what his life was like "before." One day, he recalled, his mother called from out of state, and before he could say "hello," she questioned him in an almost accusing way, "You are not gay, are you?" Later he recalled that he was grateful for her initiative. He blurted out, "Yes, Mom, I am." Nothing more was said, and he knew that she might have suspected (initiated by all the newspaper information) that he was really sick and might have this dreaded disease. Bob then started to cry like a baby. He held his pillow in his arms, sobbing into it, again and again repeating, "I'm sorry, Mom, I'm sorry."
There were very few dry eyes in the room. Two other mothers who suspected their sons to be gay and possible candidates for AIDS cried openly. Both of them left the workshop with an increased understanding and compassion. They both visited their sons to share their experience with the workshop and Bob, and later became a great support system for their sons when they became confirmed AIDS patients.
Bob spent many more sessions of sharing, both in the large room and in a more private separate room, to finish his unfinished business. Even the most judgmental ministers had tears in their eyes and approached him with a big hug! The ice was broken! Instead of judgment and more guilt, they grew in true understanding and compassion. I was not surprised when all 101 people lifted Bob up at the end of the evening session and, while gently rocking him, sang "I'll be loving you, always."
Privately I thanked God that night for giving me intuition and making a spontaneous choice from my spiritual quadrant and not from my head. Had I made my choice to take or reject him from my intellect, I might have waited and it could have been too late for Bob and the many others who followed him. The moment I could see him as a suffering human being with incredible inner beauty and honesty, I no longer had any problems either sharing meals or hugs with him. And, as is so often the case, the group took the cue from their leader and followed. It was a profound, though painful, experience that would have many ramifications in the years to come.
When Bob died he was surrounded not only by his family, but also by many of the new friends he made at the workshop. He was wearing one of my scarfs, which has become such an important part of our workshops. Since we have had an ever-increasing number of patients (cancer, multiple sclerosis, lupus, AIDS patients) who are unable to pay for the five-day workshops, I started to knit scarves during my many hours of flying from continent to continent (no two are alike and their colors, naturally, have great significance). At the end of a five-day workshop we hold a raffle and auction, and some very wealthy people pay horrendously large sums for these scarves with the label, "Hand made by EKR." (Very often, this treasure would be passed on to a patient who wore it at the time of death, often leaving a note to pass it on to another patient.) The money earned from those scarfs have paid for all our indigent patients for the past eight years; we have never had to turn any needy patient down because we have this "Scholarship Fund," as we lovingly call it.
A workshop with only AIDS patients was the next logical step as the number of requests from these patients far exceeded the places we had available, and we were always booked six to twelve months ahead of time. When an AiDS patient called we could not allow him to wait that long; we had no guarantee that he would still be alive in a year. Thanks to Hal Frank from San Diego, who used to work in my office, a place was found in northern California where AIDS patients were welcome. The retreat was in an isolated but absolutely gorgeous setting, the food healthy, and the atmosphere one of love and mutual trust.
I shall never forget the time spent up there. By then I was not living in California any more and no longer exposed to many AIDS patients, so I was still shocked at the physical appearance of these young men. They were all between twenty-one and thirty-nine years of age, all of them were sick, many of them dying. Some were so weak they had to lie on the floor during the whole session. I have never in my life seen so much genuine caring and sharing, loving and holding, as I saw during that workshop! The volunteers who assisted were the warmest, most caring women and men I have ever met and would, in years to come, make headlines and set up programs for psychological and physical support of these patients.
The stories of the AIDS patients almost repeated themselves. First, they had to come to grips with telling their families that they were homosexuals. They could not postpone that fact much longer since they had more and more hospitalizations, and sooner or later the families would know anyway. The reactions of the next of kin were manifold: from shock and total rejection to loving and supportive care. Mothers, although more dismayed about those facts, did come to their sons' help more often than fathers, who regarded them as "not worthwhile being called my son," or simply and silently "had nothing to do with them."
After sharing the reaction of the next of kin, which usually was the first and hardest lesson many of them had to learn, the reaction of society at large came up: the dentist who "refused to fix his teeth"; the cab drivers who refused to take them to the hospital when they were in dire need of emergency treatment. Many health-care professionals themselves treated the AIDS patients worse than leprosy patients, often keeping them waiting for hours or until they passed out in a little side room, where they had been placed and then "forgotten." They would wear masks and gowns just to talk to them or they would sit five feet away from them while getting information. When one of the patients wanted to make a phone call, the nurse screamed at him, "Don't you touch that phone," and then scrubbed it as if he had vomited on it. So many insults, so many rejections, so many painful memories. There were lovers who decided to kill their friends and then commit suicide since "they were going to die anyway." The issue of passive and active euthanasia was cominging up again and again. It was the time when San Francisco just started organizing support systems, a special unit for these patients, and a hot line for questions, loneliness, isolation, and, naturally, emergencies.
A bisexual man was present who discussed his horrible guilt and inability to share his thoughts with his wife, who had just given birth to a baby with AIDS. He actually envied many of the men who had male mates with whom they were able to share their problems, dilemma, and grief. He was tempted to leave his family altogether, but was unable to do so because of the sick baby, for whom he took the entire blame. During these very painful and "heavy" days, there was one man who just beamed during the whole session. I was tempted to holler at him, "What's the matter with you, are you sick?" But I restrained myself. Just a short while before the end of the workshop and my departure, I confronted him in as much of an unjudgmental manner as I was able to muster. "I noticed that you smiled the whole day; what caused this unusual reaction?" I asked him. His smile grew wider. "Yes," he said, "I'm glad you asked. If I may, I would like to share with the group why this illness has become my biggest blessing." He then proceeded to share his early childhood in a very fundamental Christian family of the South. He realized as a young teenager that he was homosexual. He tried to hide it from his family but was unable to do so. Sessions with his pastor and their church group only made his feelings of total rejection and guilt worse. He was now ostracized by the whole community. The tension grew at home, no one was willing to talk to him. The father tried to curtail his activities and forced him to work at the family business so he could keep an eye on him every minute of the day.
When he left for the West Coast, he was determined never to walk into that home again, never to talk to his parents again. His life in the "big city," although exciting at first, was not what he had hoped for. He never found the right job, and once he started to make friends he got introduced into a life-style that was very different from what he imagined his life would be.
Years passed and he found himself dying in the AIDS ward of the city hospital. He had just gone through weeks of agonizing pain, diarrhea, and vomiting. He was emaciated beyond recognition. There were only two friends left who continued to visit him; more than two dozen of his former friends had preceded him in death. He did what most of us will do in moments like this: He reviewed the windstorms of his life, of which there were many. It is true they had made him strong, self-sufficient, and independent, but it had been a short and most painful life. And then he started to drift off into a half sleep and began to review what we call the "moments." Moments are those, often too few, instances where someone in our life shows us true love. When someone just takes us in his or her arms and hugs us without an explanation. When someone (usually a grandmother or grandfather) shows that he cares -- not because of our achievements, but just because of us.
All the moments he could recall were linked with his father and his mother. How are they now? Have they aged? Were they worried? Were they well? A million questions came to his mind. He knew he really looked horrible, but he needed to see them once more before he died. He needed to tell them of his discovery that his special moments were all connected with them. The time was running out and he did not want to die without one more hug and thank-you. His doctor understood his plight. He called his mother up. She had the same voice. She did not even seem too surprised to hear from him after so many years of silence. She was very loving and straightforward, "We are looking forward to seeing you once more, son." After she hung up, he cried. He had to admit to himself that he had told her a half-lie. He told her that he was dying of cancer and wanted to see her once more. He was surprised how calmly she took the news. But he really did not want to think too much about the "once" more.
He needed to get strong enough to make the trip. He needed to borrow money for the flight. He needed a haircut and someone to shave him, and that would be a problem because of the many lesions on his face. The big day arrived. He had to borrow a suit from one of his friends, since all his clothes were far too big on him. He looked once more in the mirror. God, how long had it been since he looked at himself as an outsider would see him. He looked very emaciated, very clean...but he was on his way home! He then recounted how he crossed the meadow, approaching the log house in which he had spent his childhood. The dog came running like an old friend. Nothing seemed to have changed. His mother was sitting on the front porch and his father was sitting in a rocking chair, reading the newspaper. Mom held both arms up as she ran toward him, and Dad followed somewhat slower behind her. (They're always a little behind.) A few feet short of their meeting, a thought came to his mind that almost made him stop. God, what would happen if she really saw the purple lesions on his face? If she would stop and hesitate? If she would put her arms down and stop a few feet before they would hug each other?
His heart was racing, his feet were barely able to carry him by now. Yes, this trip was probably more than his body could take. The last thought he could remember was, "I have to face this as just another challenge and not a threat." Then he was in his mother's arms. She had not stopped. She had not hesitated. They both had their arms around each other. Then he heard his mother's voice whispering in his ear, "Son, we know you have AIDS and it's okay with us."
Their tears mingled and no other words were necessary. "You see," our friend said, "I had to have this dreadful disease to learn, to really know what unconditional love is all about." This story was the climax of our workshop. It gave hope to all those who had experienced so much rejection in their all-too-short lives. It gave awareness to all of us about the essentials in life, the true sharing and acceptance of another human being -- regardless of color, creed, or sexual preference. And for this, I say, "The AIDS epidemic will turn out to be the biggest and best teacher."
Let us visit some other AIDS patients and see how the disease has changed their lives. Mr. and Mrs. S. have only been married two years. They were looking forward to the birth of their first child, and when Suzie was born she appeared sickly almost from the beginning. The young mother also started to have spells of extreme fatigue, night sweats, and a general malaise, all of which were attributed to a young mother who had just given birth to her first child.
But life, instead of being exciting and happy, became almost a burden. Mother and child appeared to be sick, and getting sicker. The young father worried, spent seemingly endless days in doctors' offices and outpatient clinics, and received little advice or help. No one seemed to know what was wrong with the mother, or the little baby who just did not seem to thrive.
It was five months later that a new physician was consulted and diagnosed AIDS in both the mother and child. By then, the married life of the couple had practically ceased. The father was barely able to hold onto his job, and the bills were piling up. There was no laughter or singing in the house anymore, and it seemed that everyone concerned was living in a morgue. The days were spent in a hospital room looking out onto the brick wall of another building or staring into space. The conversation was sparse and the interaction between the couple was practically nil.
How does a young couple deal with such a tragedy? The father's concern was focused on the ability or inability to keep his job. Can he tell his boss and co-workers that both his young wife and his first and only child are dying of this dread disease? Is he going to be fired, or shunned by his colleagues? Are they going to move away when he wants to join them in the cafeteria? Are they going to be afraid that he may have caught the disease since he had a regular intimate relationship with his wife when she was already sick but undiagnosed? Is he going to have to see his wife die before the baby? How is his family going to react to all of this? Is the life insurance he had on his wife going to be canceled because she had AIDS, the "forbidden disease"? There were so many questions that went through his mind and so few people with whom he was able to discuss them. He felt as if he was living through a nightmare, but he realized there would be no awakening, and no resumption of the marriage that he had planned so very, very differently just a couple of years ago. What made it more difficult was the fact that it was determined that she contracted the AIDS virus two years prior to their marriage as a result of a blood transfusion that was almost certainly an unnecessary procedure as a result of dental surgery. But there was no use thinking backward. It was all very depressing. He looked at his young wife, who had aged a lot in the past few months. She just sat there holding the quiet baby in her arms, not talking to her or to him. Sometimes he wished they would just share what was going on inside their minds, but neither one wanted to hurt the other, and the result was a silent communion between the three who shared the same tragic destiny that was really beyond comprehension. Where is the support system for such families? There are many groups to help the thousands of gay men who have been affected by this disease, but too few who are familiar and ready to pitch in and help the stricken average, middle-class families who are totally unprepared for such a tragedy and who often remain in an almost permanent state of shock from which the surviving spouse "wakes up" only after the mate and child are buried. What are the chances of starting from scratch again? What woman would have the courage to marry a man after he lived for a couple of years with a wife who died of AIDS?
Mrs. P. was a woman who tried to raise her three-year-old son, John, by herself in a small Virginian community. She made a marginal living and managed quite well as long as John was well. But for the last year he had been sickly, and she finally had to give up her job to take care of his recurrent colds, pneumonias, and diarrhea. One illness led to the other, she had many doctors and a dozen diagnoses for her little one. The table in her small bedroom was covered with medicines, all of which were supposed to treat symptoms and, hopefully, make him well. Now he was slowly dying; he was no longer crying, nor was he moving around. He was just sitting in the big armchair, his eyes half-closed, and he hardly touched any food or liquid. No, she did not want to leave him in a hospital, alone again. She knew that he would die soon, and she would be left alone in this world. Life had not been easy, but somehow she would survive. She would probably move away, to someplace where nobody knew her, and nobody would ask any questions. She was sorry that she never asked anybody to take a picture of her little boy when he was well and laughing so that she could carry his photograph with her wherever she went. She could not go to her pastor, or to the local church, because they told her that AIDS was a punishment from God and all the people "like her" were of Satan and deserved what was coming to them. None of the neighbors knew of her problems except that her child was sick most of the time. God, how she would appreciate it if just one person would knock at the door and bring her a home-cooked meal, something she had not had since her little boy had stopped eating! She continued to daydream about a family who would support her, about her mother, who, instead of sitting around drunk almost all the time, would visit her grandson and take him for a ride in the stroller since he could no longer walk! Where were all the good Christian ladies and the neighborly love that she had heard about in Sunday school? Did they exist somewhere; was she simply in the wrong place?
Copyright © 1987 by Elisabeth Kübler-Ross, M.D.
The Ultimate Challenge
The Ultimate Challenge
"None of us is so unique as to be exempt from the human condition."
As the numbers of reported AIDS cases continue to climb, and the disease continues to take more and more lives, those who have to deal with the complexities of this problem continue to ask: "How do we care for these terminally ill?"
Using letters from patients, questions and answers between patient and doctor, and other compassionate tools, Dr. Elisabeth Kübler-Ross, the world's foremost expert on death and dying, shows us how to comfort the seriously ill and help AIDS patients through the critical "stages of dying" She addresses the stigma surrounding AIDS as a "gay disease" and makes a special plea for prisoners with AIDS, for women and children with AIDS, and for babies with AIDS. This remarkable book is warm and informative on one of the most important subjects of our time.