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Archive for November, 2015

Gay and Ageing – AIDS2

Being A Buddy

On arriving back in the UK from my memorable visit to San Francisco I was contacted by the Buddy Group and asked to take part in a training exercise for those wanting to take on the task of Buddying. I willingly agreed but hadn’t bargained on what was to be an incredibly moving and demanding experience. Led by an incredibly skillful psychotherapist, who promised us that whatever happened during the next 3 days he would put each of us back together before we returned home, he guided of us along the road from HIV diagnosis to the time of our certain death. We played out the issues, the fears, the process of dying and our eventual funeral with many tears, much mutual holding and bonding, and by the end, he was true to his promise, we had been put back together, but more ready for the task of being a Buddy, should we be called upon.

Wonderful Jerry

My call came a few months later when I was referred to Jerry, who lived some 30 miles away. I knew nothing about him beforehand save that he had AIDS and considered having a Buddy. Somewhat anxiously I phone him and he invited me to visit him. It was clear to me that it was entirely up to him to continue or discontinue our contact whenever he wished.

Our first meeting was bizarre to say the least. He had previously told me that he really didn’t want anyone who was straight laced, and there I was sitting there in my rather formal working suit. He told me that he really didn’t want anyone who was religious, and there was I an active member of the Church of England and a teacher of Religious Studies. Nevertheless we decided to give it a go. We agreed that for starters I would phone him each week and he would decide how our relationship might develop and how I might serve his needs. The possibilities might range from just a chat on the phone, to a regular meeting, or even perhaps something deeper and longer; neither of us knew how it would work out but we decided to give it a try.

After a short period where we simply phoned and got to know each other, my visits to him increased. Sometimes we would go into town, and other times we would simply just drink tea and  chat. He had a partner who was also HIV positive, but thus far had not developed the disease. He gave us space to be alone but I became aware of some small resentment that I was achieving a depth of knowledge about Jerry which perhaps he had not reached and so it became an urgent task to assure him at regular intervals that there was something professional about being a Buddy and that I was clear what the boundaries were in my relationship with Jerry.

So, with the assumption that my role was simply to visit Jerry, and, although the journey to his house involved a 60 mile round trip, the relationship was not demanding, but then the situation changed as I had been warned it might.

The Realities of AIDS Care

Jerry had not registered with a local GP because he was terrified about his medical condition becoming known locally. The media were irresponsible in their reporting about AIDS and already a few well known personalities had succumbed to the disease. There had been at least one report of a man being turned out of his house by neighbours, and someone had had their house set alight by arsonists. Understandably Jerry was fearful. His treatment locally, therefore, was limited to regular contact with an NHS nurse who had been trained to deal with AIDS patients, but other more intensive care took place in London hospitals. It was in those situations I saw for the first time just how dreadful this disease was. I witnessed the fear of people who came in contact with those with the condition, and the extreme security and secrecy necessary in order to protect them.

One time Jerry was in the care of the wonderful Mildmay Hospital, just close to the Columbia Road market in East London. Visiting Jerry there had to be an exercise in thorough vetting. It was impossible to get beyond the reception area without one’s personal details being taken, without it being clear who I was wanting to visit and for what reason, and with Jerry himself being contacted and asked if he wanted the visit. He told me that for him there was always the threat of someone breaking into the hospital and doing violence to the patients and from what I had heard elsewhere I understood the threat well. Similarly when he was at St. Barts the same security operated, though this time the AIDS ward was so secret that its existence was known to just the few who worked in it. The devotion and professionalism of the staff I met throughout this time of Buddying were totally wonderful.

An Evening of Blindness

It was on a Monday evening, after a demanding day’s work and after Coronation Street finished that the phone went. Jerry didn’t usually phone on a Monday but there he was. After the usual pleasantries suddenly I heard him say “Roger, I’ve gone blind. Can you come over?”. There was no doubt about the answer. I had a quick think about the sort of things I might need even for an extended visit, collected them together, and off I sped. I couldn’t even begin to imagine what the consequences of this news might be. His partner was away on holiday in Spain and I didn’t know how I could help, but the agreement we had that when he was in need I would go and be with him, whenever.

When I arrived he was in bed, amazingly composed, and glad to know I was there. I knew that a portacath had been installed in his chest, through which some of his medication was injected into his body, but I knew nothing more about the other medication he was receiving. So we chatted for a while and I got a grasp of what his needs were. He needed me to give him his medication and “no” he didn’t want the local hospital involved.

In the corner of his bedroom was a cupboard and in there from top to bottom was the largest selection of medications, for one person, that I had ever seen, and all of which were needed to keep him going. It was now his job, without his sight, and with my ignorance, to direct me to the drugs he needed and to administer them. I was to get a drip and fix it to his portacath and make sure that the whole solution went through completely. Additionally I was to give him the other tablets normally needed at that hour of the day.

I was in a panic as he gently and patiently told me what he needed. Finding the drugs was not as easy as it might sound – this was not the question of a mere packet of paracetamol we were dealing with, but some pretty powerful stuff and there seemed to be scores of options in that cupboard. Unsurprisingly I said to him “Jerry, I’m scared! What if I give you the wrong stuff?”.  In reality the actual question I was asking was “What if I give you the wrong stuff and it kills you?”.

So we began the exercise slowly and carefully, with each step being repeated by me, the directions on each package similarly repeated back to him, the progress of the drip going into his portacath reported, and me feigning a cheerfulness as the procedure continued. We began at about 9pm and finally completed it all at 2 am and we were both totally shattered. He then told me I could go and he would ring the nurse the next morning.

Facing the Inevitable

The next day the crisis had been resolved. He was still alive!!!! He was also clearly declining. More stays in hospital followed but his feelings of frustrations at the failures of his body were starting to show. He lost his temper more quickly and accepted that he needed to be in the local hospital. His mother, who lived some distance away, also now decided that she needed to with him more permanently and this added a little to the complications of his situation, especially where the role of his partner was concerned.

Visiting him in the local hospital was an interesting experience. There was a clear feeling by them that they were in the presence of something new, different and challenging. When I visited I had to run the usual gauntlet of security and now a new demand to scrub up before I was allowed to see him. There was also an acknowledgement by the staff that they were facing something new and so it was not unusual to find him surrounded by doctors and consultants who basically were asking him for direction rather than the other way round. Jerry really relished this situation.

Eventually he was well enough to be discharged but he knew his time was near. I was not surprised to have a call to say that he was back in hospital and that his situation was dire. When I arrived there was the usual greeting and his mother was there too. His partner brought him some home made soup and we tried to be cheerful and in control.

He squeezed my hand and clearly wanted to say some personal things to me and asked for ice cream in the hope that she might leave us alone for a moment, but it was typical of him that he couldn’t ask her pointedly to leave. He had thanked me on a previous occasion, but I needed to thank him for the privilege of being there with him. He was the most lovely guy, gentle, intuitive, compassionate, and a credit to the gay community. That night he died. My job was done.

Mourning and the Work Continues

Jerry’s funeral was a typical example of how society was facing, or rather not facing the fact of AIDS. No mention was made at any point about the cause of death, there had even been cases where undertakers had refused to accept a body with the disease. The service at the crematorium was the very last of the day and all the other Buddies and his other friends and family were present, grieving and nursing a shared secret which was not even allowed to be whispered. For us Buddies we continued our work and prepared for the next request from someone with the condition but for me the trauma of the experience had been too much to undertake the role again. I just couldn’t face it, but there were scores of others up and down the land, and throughout the world who did continue and whose work should never be forgotten.

Those were dark days but as gay people we had learned to be a community. We had been decimated by this disease; we were fearful but we had learned to face up to it without panic; we had learned how to memorialise those we had lost; and we had stood up to those who wanted to harm us.

Now it seems easy to move on and place those memories in the appropriate box which gets opened each December. The numbers of us, who were there, will decline as the years go by but those who live in the now do need to hold on to the experience of community which we fostered. AIDS hasn’t gone away and there remain other issues which call us to mobilise again as an LGBT community and learn again how to care. I hope we will not fail.

 

 

 

 

Gay and Ageing – AIDS 1

 

Getting Involved

The Start

The early 1980s were a lovely time for my partner and me. We bought houses, decorated them, saw things we liked on our Saturday shopping sprees and avidly searched the holiday brochures for where the next trip might take us. We travelled far and wide at will and were having a great time.

However in the mid 1980s reports started to appear in some newspapers about a new illness which was sweeping parts of the USA. At first we took no notice, perhaps it was another kind of flu, but this one started to mention that drug addicts seemed to be especially vulnerable and so were gay men! No surely not we thought. Probably it was just gay men who were also drug addicts; we were safe then.

‘Got AIDS Yet?’

However the news just didn’t want to go away, or rather the newspapers didn’t want it to go away, and a feeling of anxiety started to sweep through each gay community. What was it about us, we wondered, which made us susceptible to such an illness? Whatever it was it clearly unnerved us. The daily papers were starting to pick the issue up further with the Sun leading in a headline which said ‘Got AIDS yet?’. Tailor made language for a straight environment, not under threat, but much more threatening for us gays who individually were feeling automatically under suspicion.  Even worse was to come when one or two famous gay people died unexpectedly, and before you knew it the world had come to the conclusion that a plague was happening and all gay men were the perpetrators.

Our government now decided it needed to issue its own warnings using literature and TV adverts which only served to heighten the panic. Don’t share toothbrushes, don’t exchange bodily fluids we were told and this, in turn, was taken further as people also decided not to kiss, not to shake hands, avoid using the same toilets as gays, and so on. It was gradually becoming a nightmare and more so since there appeared to be no treatment available for the condition; it was clearly terminal and speedily so.

News travelled fast within the gay community and outside and some, who were HIV positive, were outed and some ostracised by almost everyone, including their fellow gays. Families became uncertain about how to treat their own members who were gay and now feared they might be a risk to themselves. My partner’s niece had given birth to a baby, he was invited to the christening, but his sister made sure that he didn’t hold the baby for longer than a very few seconds. We got to know of a few who had been diagnosed as positive and we were now just too scared to be in contact with them not least because now we were hearing of some being forced out of their homes by prejudice and some even having their homes set on fire. Knowing that more famous people like Rock Hudson and Kenny Everett had the condition didn’t seem to help because the feeling was being engendered that all gay people automatically would have the AIDS virus.

In the 1990s the pandemic continued remorselessly. In spite of the fact that in some parts of the world it was essentially a heterosexual disease, most people in the West had made up their minds  that it was a gay disease and gays had only themselves to blame for their behaviour. However our community, to its eternal credit, did not dig itself deeper into its burrows for safety sake and, bit by bit, organisations emerged to meet the desperate needs of those diagnosed with the virus and those with the full blown condition.

 

A Time for Buddying

At this time, I was dealing with the unexpected but not entirely unwelcome experience of early retirement, and on my list of things to do with my time, the needs of those with AIDS figured highly. I just felt that I needed to be there with them, whatever that might involve.

It was not easy to find even a phone number of the local Buddy group who were working, secretively, to serve the needs of those with AIDS but I found it and rang to express an interest in helping out.

I was understandably vetted and then introduced to the group, men and women, straight and gay, some HIV positive and others not – one, to my shock was a neighbour who lived only a few hundred yards from me. All were committed to the cause and all sworn to confidentiality, if not secrecy, about the work they were doing.  We knew that there was a handful of people in the area who had AIDS and I learned that the ward where they were treated was only just down the road from my house. Significantly I was glad to discover that the priest of the church I had been attending was the one appointed by the diocese to provide support to those with the disease and their families. Thus in a remarkable way it was all coming together. However I was yet to be confronted with the deep awful reality of the disease.

 

The Kairos House

I decided that San Francisco was the place I needed to revisit since that was where the disease was affecting literally hundreds of gay men, and others too, and that is where I went in 1993. Through a friend in the UK I was able to stay with two gay men, both of whom, it transpired, were HIV positive. They were the key to finding out about some of the services available in the city for both HIV positive people and those with full blown AIDS, and what I was discover was both totally inspiring and equally humbling.

Firstly I was introduced to the Kairos House, run by a Roman Catholic priest and who was HIV positive himself. I learned very quickly that in San Francisco it was stupid to assume anything about anyone in this experience of serving those with the disease and I soon learned too what an incredible group of people they were who were working in the field .

The house was a typical large Edwardian San Franciscan house, spacious and light. The lounge allowed for a fair number of people to gather in a group or for individuals simply to relax there in safety. A grand piano in front of the window fitted in perfectly but it wasn’t an ornament, people regularly came and played music adding to the calm atmosphere, and that was the point of the place. In a world where HIV and AIDS were regarded as a fearful ‘plague’, and where bigotry was only just round the corner, this haven was somewhere to feel safe, be accepted and receive all that the house could offer, whether it be the availability of medical advice, counselling, a place to cook, a lovely well tended garden or, significantly, a place to meet others socially.

A weekly tea party was held there for anyone who wanted to attend and it was there that I met a married couple. He was a retired naval man and she his Puerto Rican wife. They had come to San Francisco because their son lived there. On arrival they had discovered that not only was their son gay but that he was dying of AIDS too. I could only begin to imagine what this experience was doing to them and how much they needed the help which Kairos was providing them with. They had also to cope with their son’s partner who had drug problems and resented their presence. I soon discovered that there was no fudging about realities as far as AIDS was concerned – they knew and acknowledged that they were there to say ‘good bye’ to him and to build what links they could to enable him to leave this world surrounded by peace and love.

 

 

Shanti

A couple of days later I was able to visit another organisation called Shanti which provided AIDS care from a different perspective. This was where the food distribution was organised; where tickets to concerts and shows were available; where holidays and day visits organised; in fact anything which might enable those with AIDS to enjoy what was left of their lives and where the experience of isolation could be combated. Shanti’s work was urgent and required immediately and its members in too much demand for proper public accountability to be in place; while I was there financial issues were starting to emerge largely because people were just too busy to do the books well.

All over the city I saw discreet but powerful evidence of how straight and gay people were not fleeing but were remaining so as to be involved in the totally demanding issue of being there for those beautiful, largely young, people whose lives were tragically coming quickly to an end. I learned never to take anything for granted especially where religion was concerned. The Metropolitan Community Church, founded by Troy Perry, was in the forefront of such support and visiting one of its branches in Eureka Street on a Sunday evening was an overwhelmingly emotional experience as gay and lesbian people sang and prayed together. Or visiting a gay Jewish synagogue on Shabbat  where the President was HIV positive and where astoundingly, on this occasion, two lesbians took their wedding vows in front of their supportive families. Or at the huge St. Ignatius Roman Catholic Church where there was an active, though discreet, ministry to the gay community and those with the condition.

“We Love You Roberta”

Before I left San Francisco, and already totally devoted to doing what I could for AIDS sufferers in Kent, there was one further experience. The USA President, Bill Clinton had, controversially appointed Roberta Achtenberg to be the Assistant Secretary of the U.S. Dept of Housing and Urban Development. She was the first openly lesbian or gay public official of the USA, and I was there to see her joyfully being sent on her way by the LGBT community of the Castro.

The police closed the roads around the Castro; streamers were thrown over the overhead tram lines; balcony windows were opened; a platform was built in the centre of the street; and LGBTs gathered in their hundreds for the valediction. She stood there with her partner and their children, and with city worthies behind her and she heard the applause and the shouts of ‘we love you, Roberta’. It was an awesome experience and more so because the next day all the local TV companies covered the event in full. I was doubly inspired by this brave new world that had such people in it.

My mission now was clear. It was back to Kent to serve those with AIDS.

 

 

 

 

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