Similar to Damian’s story, Cosmo was a patient on the same ward, in and out with every new opportunistic infection or tumour his HIV could lay its grubby hands on. In the end he developed severe Kaposi’s sarcoma, with the classic bodily marks, from the tip of his nose, then dotted all over his body, just like the actor Tom Hanks on Philadeplphia (1993). Caring for Cosmo provided us all with ample opportunities for practicing the 6 Cs of nursing care, before they were ever spelled out to us, or systematised, as a model.
There are four stories I’d love to share with you about Cosmo (obviously not his real name). I always say it was him who helped me jump from a ‘D’ grade staff nurse’s post, to an ‘H’ grade (a modern day band 5 to 8) in only 7 months after returning to nursing from a 10 year break!
Carry on bathing
Toward the end of his life, Cosmo was really light in weight, and always too weak (and sometimes too stiff with pain) to get out of bed and take a bath. He would just have a wash. I know we all had ‘moving and handling’ training drummed in to us, but sometimes it was easier just to ‘man up’! (Please don’t tell anyone I just said that, especially not the Moving and Handling or Gender and Diversity trainers!)
On one occasion, Cosmo was rather smelly. He hadn’t been able to bathe or shower for a few days, just have a bed bath and frequent washes. He was too weak and exhausted to go to the bathroom, especially after bouts of the characteristically stinking cryptosporidium diarrhoea. Carrying bedpans from his room was enough to make the strongest stomach swivel. It was worse if a few patients had it at the same time, as the malodourous pall used to linger in the air across the ward. It felt like the stench would catch hold of the hairs in one’s nostrils, never to be removed.
I remember saying to Cosmo that he ‘really’ needed a bath! He didn’t feel like having one, especially as he said he was too weak to shuffle on down to the walk-in shower / bathroom. So I got the bath ready, nice and full and brimming with bubbles. Then I picked him up and cradled him in my arms, and I carried him to the bathroom and lowered him in. And no Matron, I don’t have a bad back (luckily!)
I started at St Mary’s Hospital on 25th September 1989. That Christmas was my first one after walking away from active parish ministry in the Catholic Church. It was a horrible feeling knowing I would not be able to celebrate Midnight Mass as an ordained priest, but I was determined to go to Mass somewhere: probably Westminster Cathedral, my favourite. But just as Christmas week approached, the ward Sister asked me if I would work a night shift on Christmas Eve. The ward was going to be short staffed, and everyone else had made party or other plans. I really felt torn as to what to do, but I agreed to work the night. That was to prove an amazingly significant decision in my life, a changing moment for me indeed.
The ward was ‘T’ shaped: the main bit (12 bedrooms) along one main corridor, then the cross bar T shape was funded by the HIV charity ‘Crusaid’. That had 8 beds. There was a central sitting area, with a small kitchen and a verander off it. It was all very cosey. It’s where Her Late Royal Highesness, Diana, The Princess of Wales, chatted and got photos with some patients only a few weeks earlier (1st December 1989, World AIDS Day). There was a TV in the sitting room, so I started shift at 8pm or whatever time it was, got all my work done settling people in to bed, medications, observations etc., and told the nurses working up on the top ward that I would take my break when Midnight Mass was on TV.
I finished everything; all the patients were safe and comfortable in their rooms, and so I dimmed the corridor lights and sat down in the lounge to watch Midnight Mass. Then Cosmo’s nurse-call buzzer went. I didn’t need to wonder why; I could smell the crypto as I walked towards his room! So I cleaned him up and washed him, changed his clothes and bed sheets, put fresh ‘inco-sheets’ under him, made him comfortable, and offered him a drink. As I left his room, I had his urine bottle full of wee in one hand and a bedpan with faeces in the other: liquid and solid. That’s important (even though gross for me to make this comparison and spell out for you here).
Just as I left his room – and I can picture these events to this day – after a few paces I was passing the lounge with the TV on, quietly, for Midnight Mass, exactly as I had left it. Just at that moment, the priest was saying those iconic, sacramental words: “Hoc est enim corpus meum” … followed by the rest of the words of consecration, I can recall from memory, in Latin and English, now this very minute:
“This is my body” / “This is my blood”. It was like some sort of reminence to the Mass of musician Leonard Bernstein; it felt as though the words were saying to me, “this is ‘HIS’ body, this is ‘HIS’ blood” about the urine and faeces I carried in my hands, those hands anointed with oil at ordination only a couple of years earlier. At that moment, and I know I am probably sounding rather sentimental about it, but it was truly like the penny dropped! Call it a revelation or an epiphany (well it was Christmas time!) but up until then I thought that walking out of parish life – for the sake of my own mental wellbeing and safety – was just a blip, some ‘time out’ to recuperate and undertake the Graduate Diploma in Psychological Counselling I was doing every Friday at the Roehampton Institute (now University).
I imagined that the Diploma experience, undertaken to give me better counselling skills to return to parish life, was equally to help me to cope with my three years priestly life in Cardiff and whatever other difficulties life might throw at me. But here and now: “this is my body / this is my blood” took on a totally new meaning for me as I carried a bedpan of solids and a bottle of fluids.
I think at that moment I realised that there was another way to exercise the service of priestly ministry that I had been called and ordained to. It was a spectacular theological realisation at that time. In all the New Testament stories about anyone or anything ‘outcast’, the stories I had been brought up on from childhood, I could now see anew in corpus et sanguinis the body and blood of the very people I was now serving or ministering to – not as a priest, but as their nurse.
“Is he one of us or one of them?”
A funny story about working on the HIV ward at that particular moment in history was that about 50% of the nurses were practicing, mainly evangelical, Christians. The other 50% were almost exclusively Irish, lapsed and Catholic. Many years later I supervised Kylie Hobern, from the Sexual Health Clinic at St Mary’s, for her brilliant (and published: click link) Master’s dissertation on the role of religion in sexual health services. But the point of this story: when I first started working on the ward, there were some people being rather inquisitive on how a 32 year old could still be on a ‘D’ grade? They wanted to know what I had done in the intervening years since qualifying. But, at first, I didn’t really want people to know I had been a priest. Gradually word got around, and the funny side of the story was that both ‘sides’ wanted to claim me as one of their own: ‘the Christians’ (as we used to called the practicing / evangelicals) would say “he’s one of us because he’s a priest”, and the “lapsed” would say: “he’s one of us, because he’s lapsed!”
But it was because of the news of priesthood getting out to the patients that Cosmo said to me one day, “Dave, we both know I’m dying, but I haven’t got a clue what to do for a funeral. Would you help me plan a funeral and celebration of my life service, please?” So I would either pop in to see him for an hour or so on a day off, or spend a shift working as a staff nurse, then take off my uniform after I’d finished, and go and spend some time with him planning his rites of passage.
The extended role of the nurse!
When Cosmo died, I presided at his funeral rites of passage. Firstly, we had a celebration of his life ceremony in the ‘Ian McKellan room’ at the then HIV hospice, The London Lighthouse. Afterwards, we all moved on to the West London Crematorium, where I completed Cosmo’s funeral service and committal.
Stigmas around both HIV and AIDS are still present today in 2017, but they were truly omnipresent in those days! Cosmo’s parents lived in a little village somewhere well outside of the London region. They simply couldn’t bring themselves to say their son had “AIDS”; so if anyone asked, they would say he had “leukæmia”. That ‘concealability’ (as I’ve written about in a text book chapter) is bound to have a ‘course’, an outcome. Sadly, this one wasn’t too good! The parents got so used to telling people their son had leukæmia that one day they said it to someone who was in remission! “Oh, I’ve had leukæmia! I was treated at The Royal Marsden Hospital, I had such-and-such treatment, that made me go bald and throw up …” Where’ your son and what treatment is he on, what side-effects of treatment has he got?
From a D to an H grade in 7 months
I’ve always loved both studying and the passion to share learning. As the inimitable and indomitable Miss Jean Broadie (Dame Maggie Smith) (1969) would say:
“I am a teacher first, last and always”!
After that missed Christmas Midnight Mass, the ‘revelation’ I had was truly profound and life-changing. It made me question and challenge all I had ever believed in before! An undergraduate course at I did at Canterbury (University of Kent: see “The Rabbi and the bean bags“) was called “The Formulation of Christian Doctrine” (FCD). The main point I remember from that course was that “orthodoxy”, ie the main beliefs that any world religion holds and promulgates comes about because, basically, one bully-boy group of believers is stronger than another! Think about it, in relation to many of the world’s main religions and fundamentalist groups today: the ‘strong’ bullying the ‘weaker’ into submission about what beliefs are acceptable. That’s how orthodoxy is formed and heterodoxy, or heresy (heretics), defined.
Anyway, as the weeks passed into months on the HIV ward, I gradually knew that I was in no rush to return to the Archdiocese of Cardiff and back to parish life. So when I saw a job advertised in teaching, it really appealed to me. The job was a lecturer-practitioner in HIV and AIDS, at the Bloomsbury and Islington College of Nursing and Midwifery. But here I was, on a ‘D’ grade staff nurse’s post (ie a newly qualified nurse’s pay grade); I had been out of nursing for ten years, and only working in this speciality for about 6 months by then. Also, my first degree was in Theology – nothing health related – and I wasn’t a qualified teacher at that point. So how could I even imaging applying for such a job? After all, the new job was an ‘H’ grade, i.e. equal to a Nursing Officer, and I had never even been an E, F, or G grade (ward sister / charge nurse / manager)!
Anyway, the other nurses on the ward found out that I was interested in applying for it and they ALL encouraged me to go for it. So I did. I got an interview, and guess what, I had to call the College from the crematorium payphone (hardly anyone I knew had a mobile phone in those days).
“I’m ever so sorry to be late for my interview, but I’m just cremating a patient!”
I thank Cosmo, to this day, for getting me that job! When I was eventually interviewed, there were five other candidates. All the others had been in nursing for many years; all were qualified and practicing teachers at that moment, in one speciality or another. When I asked for feedback on the interview and how I got the job before the others, I was told …
“We need someone who understands the current issues of HIV, and who knows about bereavement and loss. Many of the others have been teaching for a long while, so they would be teaching from text books. YOU’ve just cremated a patient!”
Thank you, ‘Cosmo’ (I still remember your real name and can see your face now). Rest in peace dear Man.
Click the links for my related stories of HIV client care, at St Mary’s Paddington: