My way of letting off steam!

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.

 

 

 

 

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