A few Friday’s ago I watched It’s a sin. I wrote this after watching it. Here’s a link if you missed it: It’s A Sin release date | Channel 4 cast, trailer, plot – Radio Times. Apparently there has been a huge uptake in requests for HIV testing since the programmes went out. We’re doing well to get to zero, we can do better and there are still people out there living with HIV completely unaware when they could be on treatment and have a much better future.
I couldn’t wait for the next episode so after the first one binge watched them all. Took me right back to that time. The heady mix of fun and tragedy. A time that kick-started me into Palliative care, a path I ended up taking without really realising, just a natural progression much like the move to be concerned for people surviving without a home.
I remember my flatmate saying, there’s bound to be an HIV question in our final exam paper, looking it up, never at that time really knowing anything about HIV or AIDS, barely heard of it. Here’s a link to more info about HIV HIV and AIDS in the United Kingdom (UK) | Avert
Then later a friend borrowing my car to get to HIV appointments. The fear of contagion that everyone had, that need to move from heart to head then head to heart (something an inspirational woman said recently) – can I attribute this quote, how safe is it to do so now?
I remember it as a time of having to learn pretty fast what consent means in a healthcare context. The prejudice so real, life or death for some. Remembering people housed in the psychiatric hospital as their ‘neighbours’ threw bricks through their windows and smeared their doors with graffiti. Me as a student being asked to do the dressing as after all I wasn’t a mental health Nurse and they couldn’t possibly do a dressing, plus of course, the person had HIV. Presumably different these days now we’re concerned for patient-centred care.
Needing explicit consent for every possible share of information which up until that time hadn’t felt so explicit. Needing to learn about medication when the patients knew much more about all of it than so many of us – rumours of sharing AZT so precious in those days, just in case allocated placebo in the trials. Taking our lead from those who had worked in London and community leaders who knew what needed to be done, found a way. Reading, reading, reading, courses, conferences…
I remember how we washed the cups up, considered if we needed bleach (we didn’t). That first patient I Nursed, so very ill with toxoplasmosis, that wonderful day when they went home as so few did at that time. Trying to sort out who would do the shopping and who would be at home. Who’d be prepared to be a carer if needed, who to call if there wasn’t anyone. Remembering how friends stepped up.
Remembering those big patches showing up on the CT scan, understanding why we were seeing the symptoms we saw. People plunging their feet in scolding hot water to get rid of that itch. Others needing to be admitted as there was no one to care So careful knowing that I was more risk to patients than they were to me.
Walking through Brixton with someone in bright pink leggings, attending a course like me, the first so very camp person I had met, crammed in on a tube, where I thought we would faint from the heat. Admiring their confidence but talking about the shit they had to live with, disowned by family, finding support elsewhere. Remembering the fun, the silliness, the jokes. Remembering my first trip to a gay club. “out the way darling, there’s a real lady coming through” “don’t touch anything, just don’t touch anything” – funny how there weren’t any ladies loos. The immersion into a world previously unknown, the kindness in the face of my feelings of awkwardness, the hugs and the tears, shared plans for what could happen next. Learning some new language. Remembering getting it wrong and admiring someone’s beautiful eyelashes (a side effect of one of the few HIV drugs that I didn’t know at the time). All those new words…pneumocystis carinii pneumonia, mycobacteria avium intracellularses, AZT, ddi, those endless TB drugs…others too, more culturally defined…
Conversations with all as we tried to make sense of this unfathomable thing that was happening. The funerals, so many funerals, designed to individual taste, celebrations of lives. How the funeral director held their own club. Everyone knew everyone…so much guilt for those that were left.
Remembering how in such a short space of time moved from a position of prejudice to understanding what real love is. Love in action. Watching how despite everything shit was cleared up. People made comfortable, cared for, loved. But how we were in a bubble. A bubble that burst outside of HIV circles, hopefully, different now that it’s the treatable disease it is. It was different here too when I came home.
Issues with my in-laws years later, fear prejudice and unknowing. Something that hasn’t gone away for many, leaves people isolated and afraid of discovery, something that desperately needs to be different so that people can just live their lives. Have you had an HIV test?
Remembering the fun times. BBQ’s at our team leaders house. Nights out in Brighton, different cultures shared, our sameness and our differences celebrated, each valued for what they could bring. Lots and lots of fun and games, lots of homemade food. Nightshifts making paper mache boxes between answering call bells. That pot of glue on my head after reaching up for the previous night’s craft, Les miserable soundtrack back to back.
Remembering sitting with people younger than me, dying, dying so slowly, that feeling of powerlessness, needing it to be OK when it wasn’t. Not understanding why. Young bodies taking longer to die, walking skeletons, tempted with custard made with cream and added ice cream to get in the calories where we could. Seeking out those with Palliative care experience; how could we make this better, knowing that it wouldn’t stop the dying but could make it more bearable. Prejudice there too back in the day. Hopefully different now. People well but getting older like us all, needing integrated care as we all do.
Seeing that for all those torturous hours of being at that bedside healing can happen if we stay with it, tolerate those tough times. A gift of potential healing unrevealed at the time, opportunities to say what needs to said, healing for both the person who is dying and for those left behind. How we came to know what really matters when time is short, the legacy that is left. “Cut the crap and tell me how you really feel” echoes of a patient who taught me so much, wanting to share knowledge, pool our resources as much as possible to way up what should be done. Much laughter shared, loved by those closest and never forgotten. A person whose life I shared just a tiny bit of from terror, pain to laughter and much in between but ending nevertheless in a life cut short, before what should have been their time. Here’s a link to follow the haemophilia enquiry on twitter .The Haemophilia Society Public Inquiry Team (@HaemoSocUK_PI) / Twitter
So I write in solidarity with those whose loved ones died at that dreadful time, never forgetting the love and for those that feel that they can’t share their world with people who judge what they don’t know. For those that might be living in poverty because they maxed out on credit cards and cashed in pensions or don’t have access to the medication they need, for those who survived when they thought they wouldn’t. When we thought there would be no tomorrow and dying was all there was. Celebrating the world of staying at home and recognising what a luxury home is.
So I had my HIV test, recognising that if we’ve had sex we’ve had it with everyone that that person had sex with too. Perhaps today might be the day you do the research and get yours too? Freetesting HIV | Free HIV Kits for Self-testing at Home
How Edinburgh became the Aids capital of Europe – BBC News Wondering what the world would look like if there was less judgement and more compassion.
Remembering the legacy of love.