Today I am beginning a series of articles recounting my personal journey as a Chaplain. I am making a personal determination to post an article at least one time a week until I feel I have completed my objective. I hope you enjoy. Please feel free to comment.
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In 1979 I lost my first friend to AIDS, several years before the disease had an actual name and before people really began to understand this terrible illness. At the time I was living in Hawaii and the partner of a very close friend who was living in Los Angles at the time was the first time I had even been associated with anyone who died of a serious illness. I received a phone call telling me that Dan was very sick and probably dying.
I naturally wanted to do anything I could to comfort both of my friends; the one dying and the one living with the death. Steve told me that he didn’t recommend that I make the trip since they didn’t know exactly what the illness was and whether it was contagious. Steve told me that a few of his friends in Los Angles were also sick or had recently died. After several days of considering the potential danger, even if truly unknown, and the benefit to Steve I decided to make the trip to be with him.
It was about six months later that I received the news that Dan had died. Steve was naturally devastated. About a year after that event I myself moved from Hawaii to San Diego. By this time it was 1981 and the gay disease was everywhere; people were dying. The deaths kept increasing in number and it was impossible to comprehend the number of people dying of this new disease.
The tragedy of the illness and death was compounded by the way society at large reacted to the disease. It was very common for people to be shunned, abandoned by friends and family. Part of this was out of ignorance over how the disease was transmitted, and part of it was because of the stigma of the disease. I also think that another part of the problem was the magnitude of the deaths and the speed at which it spread throughout the gay community.
Initially I began to take care of one or two people by visiting them and being their friend. Then I became active in a community service that would pick up soiled laundry from the sick, wash, fold, and return the clean laundry the following weak. Each week the organization would make the rounds providing clean laundry to those who otherwise would not have been able too.
Because of my involvement with this group more people would be ‘referred’ to me. These would be people who through word of mouth I would visit, many of whom had been abandoned by family and friends. Often all I would do was to call or drop by once or twice a week after I got off from work. Sometimes my partner would come with me. Most of the time I would only be with a patient for a few weeks before they died. For some I became one of only a few people who cared about their existence.
Occasionally I would also provide what I called primitive medical assistance. This would be mainly trying to get medicine through a friend of mine who was a dentist and had prescribing privileges. Most of the time we agreed that the medicine would be virtually useless, and perhaps I was only prescribing to relieve my own anxiety. Sometimes the medicine did help relieve some suffering but nothing would provide a cure. My primitive care also included changing dressings on wounds that would sometimes cover large areas of the body. This was not glamorous work and sometimes I wonder how I was able to tolerate what I witnessed. I also wonder how it was that I never became infected since I used no infection control such as gloves or masks; who had money for those items anyway. My care also provided changing linens, helping with body waste emptying bedpans or changing soiled clothing. And there were times when I would bring my own razor over to give the person a shave; nothing makes you feel quite as good as a clean face and clean teeth.
There were a number of funerals I would attend or even arrange. Sometimes at death a family member would show up to claim the inheritance even though they had not been present during the illness. There were a couple of times when no one would show up and my partner and I made arrangements for burial.
The really sad thing, which still stays with me, is the young age of many and the isolation in death they experienced. But it was not all without hope. It was during this time of caring that I learned a very valuable lesson that has stuck with me. For many of these young boys, and not just the ones I witnessed but all throughout the gay community there were similar stories. Many people who were dying used the final days and weeks of their lives to do something they had not done before.
Some of these young men decided to live their final days however many or few they were sober and clean from drugs. One young boy I knew decided he wanted to play the trumpet and for two weeks until he died he practiced every day. There are stories of people trying to learn a new language or drawing or painting. These were people who, maybe for the first time in their lives, knew what it mean to be alive and how valuable life is no matter how long it lasts.
Hope in the face of hopelessness. Most of us travel from day to day without any real sense of awareness of the journey. We go on living as if living will go on. Death is a non-existent event for many of us in our daily lives. Yet these young men who on the surface had nothing to live for found a reason to live and something of value in the living.
How many of us can appreciate the magnitude of the life choice to live in pain and loneliness waiting for an inevitable death within a short period of time and decide to do so without taking drugs that had been a way of life previously. It is easy to say well they were only clean or sober for two weeks. Or it is easy to condemn the drug use in the first place, but here is someone who has made a choice to die awake and alive and with joy and dignity. How many of us can be certain we could and would be so alive as we die?
