- Shopping Bag ( 0 items )
Incredible beside companion...Kübler-Ross has been considered the world's foremost expert on death and dying.
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 otherhundred 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 t
Posted June 28, 2012
Posted August 4, 2008
This book really opened my eyes to a disease in which I have witnessed a loved one suffer. It helped me to understand the fear and loneliness that can be accompanied by this virus due to society, but also the comaraderie that can be formed through empathy. This book also encouraged me to seek out an individual that has been long lost to our family and make, what I felt to be, ammends.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.