By Bill Wilson
Bill Wilson © 2011
The 30th anniversary of the first report 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 experienced 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 direct and honest person I ever known. Once, when I was picking up his prescriptions at the drugstore, the person filling the order yelled from behind the counter, “You should be glad you have insurance this package alone is over $300.” I couldn’t believe he had just told half the store I had over $300 in drugs in my possession. When I was telling John about this he interrupted with a question, “Did you tell the manager?” When I answered no he said, “Then why are you telling 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 independent creative person to a person dependent on others. John was able to move forward and never second guess himself traits that made him his best advocate right up to the end.
One Friday afternoon John informed 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 taking longer than they expected. He called a second time saying that they had decided that he was going 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 chest used for the administration of the drug, DHPG. I expressed my amazement at how fast he was able to make his decisions. He said that there had really been no decision to make because the drug would not restore the sight 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 drug as soon as possible.
He was very willing to fight to keep his sight because he was a very creative and wonderfully gifted 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 need 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 stop his treatment with DHPG for his Cytomegalovirus (CMV) retinitis. At first the social worker told him hat it was against policy because they didn’t allow “curative” therapies under the hospice philosophy. John explained, “I don’t have much sight left, but I am not willing to sacrifice what sight 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 exception in my case.” When the next person came and tried to talk him out of the treatment that person explained that the hospice personnel weren’t trained to give IV drug treatments. John told them that, before he had agreed to come to the hospice, he had talked with his visiting nurse and she had told him she would come to the hospice to administer the drug, if necessary. By this time they were high enough up the chain of command that when the next person arrived to tell him that they weren’t going to allow the treatment to continue, he said, “It is not a question of if I get the treatment, it is only a question of where. The visiting nurse has said she would come and administer the drug. 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 property?” 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 just told her that if she wanted someone with her when John died she should call them now because they didn’t expect John to live 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 exhale and we would listen to hear if he took another breath. Then just as you began to think that was it, he would draw in another breath. There really wasn’t much to say. John had been a fighter, but it was clear that he wasn’t long for this world. After two hours John’s mother said to me, “This could take forever.”
In my mind, 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 bring 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 nurse was straddling John with her head on his chest. She looked up at me and said, “We think 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 notify them of John’s death. His lawyer informed me that he didn’t make “hospice calls” and told me to tell John’s mother that they would meet later at John’s apartment. John’s sister, Anna, eventually arrived around noon. I gave her some time with her mother in private and then John’s mother 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 moment 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 watch 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 memorial service I attended for a person who died of Aids was for Dirk Difenbach in June 1983. I know 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 partner, stood at the back of the church and shook hands with people as they left. Because I really had no idea 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 person 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 happen to others. As I was talking David leaned closer to me and I instinctively put my hand on his shoulder the same shoulder, I would be holding six years later as he took his last breath.
There was an interval of five years before I went to work for him as a chore aide. On one of my early visits to David he told me a long story 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 ulterior 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 sort of blurred ethical boundaries. It was about pain and suffering and doing what little you could to minimize 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 chance.
David had watched so many of his friends die that he knew what was in store for him. As a medical professional himself, he understood better than most what was happening. He was a practicing dentist until he was fired for having Aids. The obituary for Dirk Difenbach in the Washington Post used both David’s name and the address where they lived. It didn’t take long for the company that owned the practice where he was employed to call him and tell him not to come to work. In a long and detailed letter written in legalese they explained the consequences of his not going quietly. 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 police at Stonewall on June 1969, they didn’t understand that they were dealing with a person who knew the only shame 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 Education Fund of the Whitman –Walker Clinic.
David was adopted. I have no doubt 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 mother was so defensive and unable to listen to what David wanted in terms of his end of life. He wanted to die at home. 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 hospital to have his medication adjusted, he told me that he had called his parents and invited them to come for one last visit. 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 upset 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 remove his journal from his bedside and give it to the person who had urged him to write about his feelings, because he didn’t want 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 read.” She took it and put it in her suitcase.
As the visit stretched into a month, things became more stressful for everyone involved. David’s father was running out of his heart medication and was having trouble filling his prescription. On the day that David died I arrived at his apartment around 9:30 am. He sent me to the store to get some items. When I came back his mother was in near hysterics. David had fallen in the kitchen 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 help 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 trying 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 care 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 expect to see you at the hospital.”
The ambulance attendants were David’s worst nightmare incarnate. It just seemed that they were there to reinforce every reason David didn’t want to go to the hospital. They parked the ambulance at the entrance most distant from David’s apartment. When I pointed out that the service entrance was just two doors from David’s apartment they said that there was no place to turn around, so they would have had to either back in or back out and they didn’t want to do that. When I pointed out that the Connecticut Avenue entrance was only four doors from David’s apartment, they told me they couldn’t block traffic on such a busy thoroughfare. They didn’t bring a stretcher, just this saucer type thing that David had to sit in as they carried him down the hallway. As we started down the hallway with me carrying the oxygen tank I was upset. By the time we had gotten about half way down the first of two long hallways, one of the attendant said to the other, “He is a lot heavier than I thought, I think I’m going to drop him.” I was livid.
I drove David’s parents to the emergency room and let them off while I went to park the car. After spending time in the waiting room the social worker came out and told me that David’s parents had told him to tell me that they would take a taxi back home when they were finished so I didn’t have to wait. I told the social worker to tell them I wasn’t going anywhere. I would wait for them so that they didn’t have to take a taxi home. About five minutes later David parents came out told me that I should come with them and wait next to David. I didn’t now at the time why I was allowed to go back to where they had taken David, but I found out later. We stood around the stretcher used to bring David in, because they thought that he was so near death they didn’t want to move him. So we waited and watched. His mother was crying and David was not aware of much if anything. We again just listened to the breathing. Finally the nurse decided that we had to move him to a bed. She got the attendant to actually help her lift him and put him on the bed, but she asked me to help as she had to change the sheets. It involved rolling David on his side and me holding him while he tucked the sheet under him. He was facing me as I supported his shoulder with my hand. I don’t know how to explain this except to say it was obvious to me that he had taken his last breath. There was only a flimsy privacy curtain separating us from the rest of the room, so I very calmly and quietly said to the nurse, “I think he just took his last breath.”
Her reply to me was, “I want you to now come on this side and we’ll roll him over towards you.” That was not the response I expected and I was taken aback so I said a little louder, “What difference is it going to make? He isn’t breathing!”
The shock on her face couldn’t have been more obvious. It was as if I had slapped her across the face. She started rushing around the bed and yelled, “Get your parents in here!”
That of course was not the time to correct her, but it did answer the question of why I was allowed in the emergency room and not left in the waiting room.
On our way back to David’s apartment his mother did ask me if I thought David was aware that they were with him at the end. I knew what she was asking, because obviously she had heard me tell the nurse that he had taken his last breath. However the way she asked the question, there was no doubt in my mind that David was aware, so I could honestly answer that I thought he knew that she was there with him.
David had been right about trying to spare his mother the pain of reading his journal. She wrote to me several times that after reading the journal she had lost sleep agonizing over how David had suffered.
At David’s memorial service I found out from the social worker that the reason the nurse panicked was that she was new to the emergency room and David’s was the first death that she had happened on her watch. We both were experiencing life and death in the age of Aids.
See Related On Scene with Bill Wilson Archive
Bill Wilson is a San Francisco-based veteran photojournalist. Bill embraced photojournalism at the age of eight. In recent years, his photos capture historic record of the San Francisco LGBT community in the Bay Area Reporter (BAR), The New York Times, The San Francisco Chronicle, The San Francisco Examiner, SFist, SFAppeal. Bill has contributed to the Sentinel for the past seven years. Email Bill Wilson at firstname.lastname@example.org.