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On Scene with Bill Wilson Life and Death in the Age of Aids

22.05.12

The 30th anniversary of the first article of what would become known as AIDS has made me pause to reflect and re-live, in my mind some of the events that I proficient at the beginning of the crisis. I’ve only been present at the moment of death on two occasions and both involved people who died from complications associated with AIDS.

John Warren was the most frank and honest person I ever known. Once, when I was picking up his prescriptions at the drugstore, the person contents the order yelled from behind the counter, “You should be glad you have insurance this package alone is over $300.” I couldn’t suppose he had just told half the store I had over $300 in drugs in my possession. When I was giving away the whole show John about this he interrupted with a question, “Did you tell the manager?” When I answered no he said, “Then why are you potent me? The manager could do something about it, I can’t.”

That razor focus helped John in many of the difficult decisions he was faced while I knew him. He was transitioning from an untrammelled creative person to a person dependent on others. John was able to move forward and never promote guess himself traits that made him his best advocate right up to the end.

One Friday afternoon John learned me that he had a doctor’s appointment to see about a treatment for his CMV retinitis. He called me from the doctor’s office saying that it was bewitching longer than they expected. He called a second time saying that they had decided that he was effective to be hospitalized overnight so they could install a catheter in his chest. When I went to visit him the following Monday afternoon he had a catheter in his box used for the administration of the drug, DHPG. I expressed my amazement at how fast he was able to alter b transfer his decisions. He said that there had really been no decision to make because the drug would not restore the spy he had already lost, but only slow or halt further deterioration. He didn’t intend to go blind, so there was no choice but to get the benumb as soon as possible.

He was very willing to fight to keep his sight because he was a very creative and wonderfully masterly artist. I have a painting he did of an orchid that every time I pass it I have to remind myself that it doesn’t dire water, even though it seems to be growing right out of the frame, it is so real looking.

When John was admitted to the hospice they wanted to arrest his treatment with DHPG for his Cytomegalovirus (CMV) retinitis. At first the social worker told him hat it was against behaviour because they didn’t allow “curative” therapies under the hospice thinking. John explained, “I don’t have much sight left, but I am not willing to sacrifice what fright I have because of your rules. I don’t want to go blind because of your rules. Either you change your rules or make an be offended at in my case.” When the next person came and tried to talk him out of the treatment that individual explained that the hospice personnel weren’t trained to give IV drug treatments. John told them that, before he had agreed to acquire a win to the hospice, he had talked with his visiting nurse and she had told him she would come to the hospice to oversee the drug, if necessary. By this time they were high enough up the chain of command that when the next person arrived to disbosom oneself him that they weren’t going to allow the treatment to continue, he said, “It is not a problem of if I get the treatment, it is only a question of where. The visiting nurse has said she would come and administer the dull. The only thing that you have to decide is will she give it to me here in the comfort and safety of this room, or will I have to wheel myself across the street so that she isn’t on hospice quality?” The treatments continued up until the day before he died.

I got call from John’s mother at 6:30am on a Saturday morning in January of 1989. She said that the doctors had precisely told her that if she wanted someone with her when John died she should call them now because they didn’t expect John to material much longer. I got dressed and arrived at the hospice around 7. I sat on one side of the bed and his mother sat on the other. John would suspire and we would listen to hear if he took another breath. Then just as you began to think that was it, he would deploy in another breath. There really wasn’t much to say. John had been a fighter, but it was clear that he wasn’t extensive for this world. After two hours John’s mother said to me, “This could take forever.”

In my take note of, as clear as could be, I heard John say, “See I can’t even die soon enough for my mother.” I asked if she wanted me to produce anything to her from vending machine down the hall. I wasn’t gone for more than a few minutes but when I came back the sister was straddling John with her head on his chest. She looked up at me and said, “We mull over he may have taken is last breath.” He had.

John’s mother gave me a list of people that she wanted me to call to tell them of John’s death. His lawyer informed me that he didn’t make “hospice calls” and told me to announce John’s mother that they would meet later at John’s apartment. John’s sister, Anna, at last arrived around noon. I gave her some time with her mother in private and then John’s mam told me that Anna wanted to see me. As I entered the room she asked, “John looks bad. Did he look this bad before he died?”

It took me a prominence or two to realize she expected an answer from me. I looked at the bed where John was lying with the sheet tucked under his chin so only his head showed. I looked at the make eyes at look for on my wrist. I did a quick math calculation in my head and finally said, “He died three hours ago. He didn’t look this bad twenty minutes ago.”

The first reminder service I attended for a person who died of Aids was for Dirk Difenbach in June 1983. I advised of he was the sixth person to die of Aids because that it what the headline on his obituary said. After the service Reverend Larry Uhrig and David Brown, Dirk’s associate, stood at the back of the church and shook hands with people as they left. Because I really had no picture what to say to someone who had lost his partner I held back and tried desperately to think of something to say. I ended up being the last human being in line. As I took David’s hand in mine I said I would do everything I could to make sure that this didn’t prove to others. As I was talking David leaned closer to me and I instinctively put my hand on his shoulder the same set, I would be holding six years later as he took his last breath.

There was an interval of five years before I went to calling for him as a chore aide. On one of my early visits to David he told me a long copy of how he had assisted a friend to end his life. I realized about half way through the story that he was telling me this with an beyond motive. He wanted to know my reaction, so he could judge whether I would be the one to do the same for him. That was the thing about AIDS it classification of blurred ethical boundaries. It was about pain and suffering and doing what little you could to undervalue both. So there was no doubt in my mind that the answer to his question was that I would be willing to help him, but I was never given the opportunity.

David had watched so many of his friends die that he knew what was in store for him. As a medical professional himself, he accepted better than most what was happening. He was a practicing dentist until he was fired for having Aids. The necrology for Dirk Difenbach in the Washington Post used both David’s name and the address where they lived. It didn’t take covet for the company that owned the practice where he was employed to call him and tell him not to come to work. In a elongated and detailed letter written in legalese they explained the consequences of his not going in whispers. They told him they would call in the loan he had on his dental equipment and he would be forced to pay hundreds of thousands of dollars. Like the the cops at Stonewall on June 1969, they didn’t understand that they were dealing with a person who knew the only smear was in the way he was being treated. The company’s fear of publicity led to an out of court settlement that led to the founding of the Aids Training Fund of the Whitman –Walker Clinic.

David was adopted. I have no disquiet that his parents loved him and supported him just as if he was their biological son. I only mention it because I think it explains why his materfamilias was so defensive and unable to listen to what David wanted in terms of his end of life. He wanted to die at accommodation. He wanted to be surrounded by loved ones. He did not want to be hooked up to tubes, wires or machines. Some of those wishes were honored, but not all.

When David was in the asylum to have his medication adjusted, he told me that he had called his parents and invited them to come for one last smite. He said that he planned on them staying for two weeks and then they would go back to Colorado. Unfortunately, when his mother arrived she was so knock over by the way he looked that she vowed she would not be going home because the end was near. David had instructed us when he died to efface his journal from his bedside and give it to the person who had urged him to write about his feelings, because he didn’t shortage his mother to read it. We didn’t act quickly enough, because on the first night his mother noticed it on the bookshelf by David’s bed and said, “Oh this is something I have to skim.” She took it and put it in her suitcase.

As the visit stretched into a month, things became more stressful for everyone knotty. David’s father was running out of his heart medication and was having trouble components his prescription. On the day that David died I arrived at his apartment around 9:30 am. He sent me to the value to get some items. When I came back his mother was in near hysterics. David had fallen in the cookhouse on his way from the bathroom to his bed in the living room. His mother had been unable to lift him and his father wasn’t any resist because of his heart condition. David managed to get back in bed but his mother was being insistent that he go to the hospital. She was on the phone talking with his doctor. I was annoying to think of how to bring up that David didn’t want to go to the hospital, when she practically screamed into the phone, “I don’t charge what he wants. I am his Mother and I want him to go to the hospital. I’ve already called the ambulance. They are going to be here at 1. I contemplate to see you at the hospital.

Source: SanFranciscoSentinel.com