So here I am waiting at school for the before school returns covid test. I’m grateful that school have been so accommodating allowing us to do it today instead of the previously booked one, saving us milage and time.
We’re here on our way back from the, just pop back if you have any concerns hospital appointment. You know the appointment that takes 45 minutes to get there and isn’t available closer to home. The appointment that would if traveling by bus take 1/2 a day, the appointment that would mean a half day off work and represents additional school hours lost. You know that ableist one miles away. I wonder why there isn’t a clinic locally, closer to home, more accessible? I wonder what’s getting in the way of providing that?
I enquired about a job today. Took a chance, seeking opportunities where they may not be but without enquiries certainly would not be. We’ll see.
I wonder when that’ll be different? Of course she was qualified, how offensive! Reminded me of a video I saw on social media of a Nurse being racially abused, a lecturer living with this day in day out, seen in lots of ways but never seen as a lecturer.
I remember when my Aunt was in a Nursing home. The staff insisted on calling her by her name, well of course, it was her home. The bit that went unspoken of was the convention of the era she came from, her preferance asked but ignored. No one, and I mean no one called her by her first name and certainly didn’t expect that in her new home.
And what of others names? Preference for titles, preferance to just have their names spoken correctly, preference to be seen. Seen more than ‘the student’.
Thinking about a cousin never know by the name on the forms. Of course no one would know without asking.
I’ve always been rubbish with names. Called our neighbour the wrong name for ten years. So embarrassing when we finally straightened it out.
So with all these little snippets of time that I was wasting on social media I’ve begun to use a few of them to learn a language, just 10minutes a day with one of those free apps. Recalling my sister, well if the bloody bird can speak French I’m sure I can.
I’m hopeful it’ll help me get better with name pronunciation, maybe useful home and abroad. Keep the brain ticking over while I search for life’s next adventure.
Anyway, all done. A self test. I asked how it went. It was fine, you know that brush that Dad uses to clean the bird feeder, well it’s like a mini one of those. The mind boggles, children hey.
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…
Picture of text books used back in the day
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
I was reading Dr Kinouani’s piece on deprivation in it she mentions her internal narrative and it got me thinking about what is mine and I guess my narrative would be money doesn’t buy happiness. I think that comes from a belief that health is much more important than wealth or is in fact wealth. I guess that’s easy for me to say not having ever needed to worry too much about money but having experienced what it is like to not have my health. Interesting that link between happiness and wealth.
Yet not having enough money for food is so tied to health so I guess on reflection they are inextricably linked, particularly if the worry of where the next meal is coming from is the dominant one. In the article Dr Kinouani invites us to look at the intersection between material abundance and maternal abundance.
I would say for me I had material abundance but maternal deprivation. A pattern hard to not repeat, after all here I am writing this and we’re on half term…
In our community group we were talking about state sanctioned separation, for example boarding schools, for some reason that takes my mind to state sanctioned violence, individuation that leads to isolation. I shared a story in which the family expectation was that the children would go to boarding school. Despite experiencing such distress that the child was given Kaolin and morphine KAOLIN WITH MORPHINE | Drug | BNF content published by NICE to combat home sickness as a new boarding school child at 11 there was still an initial keenness to keep this family tradition. Does that speak to that fear of missing out that we’ve spoken of before? Is that real or imagined if the system is a meritocracy as we like to pretend?
Do we talk about that significant parental deprivation? I wonder what it did to the child who boarded from the age of 7. We reflected with him when our children were that age. He was very matter of fact about it as you would perhaps expect, that split off side of himself seen. His parents were advised by his Doctor to send him away “for the air” after nearly drowning in the pond that used to be at Vista Road recreation ground. A sentence that doesn’t make sense given that we live by the sea. But things were different then A Brief History of Boarding School: UK and Canada (ourkids.net). It’s interesting that this article doesn’t mention home sickness, bullying and the requirement to assimilate.
We talked about the non touch of whiteness. How it requires assimilation at all costs to the self and I’m reminded again of my own story, my own assimilation and brought back to the writings of Dr Turner, how our internal supremacy comes to the top and I witnessed how that happened in our discussion with our concerns being about boarding school or more broadly speaking life assimilation or annihilation. That sense of entitlement to be in all spaces. We talked about having a place, how hard it is to speak up when comfort lays in staying quiet.
Why did we spend more time talking about assimilation with only late attention to the annihilation that that brings with it? Fears of being killed expressed. We talked about how hope and hopelessness exist in the same space.
Where is the space for grief? That needed, necessary space? That overwhelming pain?
During the discussion containment of grief was mentioned. I suggest that containment is unnecessary, it’s part of the process to feel uncontained. It’s brutal. It’s a raging storm and feels overwhelming, it hurts physically, emotionally, spiritually. But that’s ok because as painful as it is it will pass. It does pass. And in those moments it’s enough that your next breath comes, anything more is unrealistic. It might hit again unexpectedly from apparently nowhere, and that’s ok, it will come and go, it’s not a one off event but a lived with journey that changes over time, an enduring, changing love. Triggered by something that only in retrospect can be seen for what it truly is. I’m no expert. That’s just how I’ve experienced grief over time. Coping with grief | Cruse Bereavement Care
Grief is tiring. It’s exhausting. It makes you awake when you want to sleep and sleep when you want to be awake.
And so we come to privilege. Privilege to speak out, privilege to have the space to wait for that next breath to come. How will you use yours to give that space to others?
In my dream there was a gate. An old ramshackle familiar gate. A gate that I know leads only to a small space, a small garden, I could see the garden, it’s familiar, it’s home. I considered in the dream changing the gate, perhaps buying a new gate rather than repairing it. The gate belongs to me but in the dream of the gate I wasn’t the owner, just stuck with this old rotting gate, I wonder what that means…
In the next dream there were people falling over, I was trying to catch them. I was taking them to a Dr. Being there.
Culture of inclusion, that’s an interesting thought. I was listening to the female lead on LinkedIn. Do those who leave their employment say why they leave? Where are those valuable people? How might they enhance the workforce? It’s a lonely path but at least I had my say in order to keep my own integrity but when that is met with denial and twisted words it can leave no other option but to walk away. I’m still reading Dr Turners book, Intersections of Privilege and Otherness in Counselling and Psychotherapy: Mockingbird: Amazon.co.uk: Turner, Dwight: 9780367426774: Books in it he asks what we kill off in ourselves in the process. He suggests that feelings of otherness come from shame and fear. When I was redeployed it was to somewhere that I knew could potentially trigger issues in bereavement that are life long for me, I sought to avoid them for my own safety. These were overridden and in stead of speaking up I allowed myself to be put in a position that I knew would be harmful. Further issues of shame and fear were triggered, leading to that spiralling that can happen.
During this time I was told to go home to my family if I couldn’t comply with the 12hr shift pattern which again I knew wouldn’t be possible with my other commitments – what other aspects of ourselves do we have to shut off in order to conform, Dr Turner asks in his book. My previous work allowed for personal integrity, a team that valued diversity and the contribution each person made. That need for supremacy not required as each valued for their individual contribution. To go from that to daily criticism was a trigger for me.
Is it a feature of whiteness that need for power. I notice in myself how a knock back led to me taking negative actions and how each negative act pushed on to the next negative act and it makes me wonder what a difference there would in society and in the work place if instead of destructive power filtering down what if it was positivity and acceptance and inclusion. I hate the notion of tolerance. After all who wants to be tolerated! Do we just want to fairly trade our gifts, whatever those might be? I’m mindful of an interview I attended years ago, after pretty much being told I would get the job, actively encouraged to apply, doing the job and then being I told I hadn’t been selected. It left me and others bewildered. Devastated actually, it took me a long time to get back up from that. Sometimes how people are treated is pretty dreadful. Then a different interview, this time with someone from HR sitting in. A completely different outcome and experience. I think others are pretty clueless about that hurt that is caused. That’s why I speak out. It’s not ok. While I was volunteering I met this person who felt they’d been so badly treated that honestly couldn’t ever imagine that they would work again, too afraid to put themselves in that position. Another who’d lost their home because of a mistake that had gone unrecognised, unresolved despite months of fighting to get it sorted out.
So here we are. A lone wheel very much aware of that cycle of socialisation that was spoken of. By speaking up I became the problem in a way that seeks to keep “the problem” hidden. Especially poignant having been tasked to audit the gaps.
So what are those costs, real or imagined. Probably any notion of career I might once have aspired to. Walking away from Palliative care, walking away from Nursing. Walking away from my work in homelessness. Yep the stakes for me have been pretty high to keep my integrity. I fight on (I know you hate that term, so make it different!) because I recognise my privilege in being able to walk away, what about those who can’t. Those who come next. Those next generations, Those who are dying by postcode Health inequalities: death by political means | The BMJ (oclc.org) . What those internal effects for me are yet to be seen but the pain of which I experienced bodily when I undertook the Introduction to racial trauma course.
During my time with race reflections RACE REFLECTIONS – Rethinking inequality, injustice and oppression I have been able to reflect on encounters with whiteness, identify when they show up in a way that was previously hidden to me (again those intersections of privilege). In some ways it makes everything less hopeful but creating that space to explore and reflect helpful in moving to a better place. I’m working through that as you read in this blog. But it’s pretty freeing to know that you are enough.
I’ve worked so hard over the years trying to be the best I can. Career wise it’s got me no where. Sadly it doesn’t seem possible to have a part-time career, what a difference it would make if that was possible. I was shocked to learn recently a colleague too in this position, reflecting on others who have been treated badly in the past, those who daily experience those arrows Dr Turner talks about. It makes it more real. It’s a head screw up, makes you feel like you’re making a fuss. No. There is fuss to be made, for the sake of all of us. Another up side at least I’ve moved to ethical investments seeking abundance in all it’s many forms, seeking that for others.
That sense of otherness is passed down through the generations, my child just said “what do normal people…” How do we interrupt those circles?
Isn’t karma a wonderful thing. We love a bit of revenge don’t we as humans. Our vet was so condescending to me recently. A mix of with good cause and exhibiting whiteness, talking down to me. They assuming my stupidity, different after noticing that the mistake was not only mine.
I had a dream; in it there was this weight on my right ankle – It felt like a shackle.
