Somethings Take Time To See

It was around the end of 2011 when my super good friend, and great artist & writer, Paul Harrison and I got together in a Cafe Nero in Doncaster (The only place to get a decent chai-tea latte in the area at the time… maybe it still is) and we talked about how we thought new media art and ‘socially engaged’ art were crucial tools to help enable critical thinking— and therefore —- more openness.  Perhaps it could help enhance a more epistemic justice. Because gosh knows there needed to be. It was a crucial time. The Tories had just gotten into power the year before and their cutting of projects, programs, funding, closing libraries and youth centres and the trippling of universities fees was happening right in front of our eyes. Lots of protests, lots of petitions to sign in the beginning. It felt important to try and provide a place where people could connect – learn – listen – without needing much more than 10 mins. But give it light, give it time, give people a space, and elevate it.

We were sick of the insular systems surrounding the artworld (& outside in a lot of institutions) – who gets to speak and from where? Who always gets a big chunk of the opportunities and the dialogue? What kinds of voices are not as-well-acknowledged and represented as they should be? We also wanted to share people’s passions- unedited. it didn’t need to be a flow funny or deep narrative that’s curated like TED talks are (which they are). it can – and should – just be words that needed to be said. No scripts. Not really a time limit (tho for our art making needed to be around 10 mins & also increase the likilhood someone would have time to listen)

We talked at ends and decided that our individual practices might not be the vehicle for it. So that’s where we decided to create F/o/r/c/e– which stands for Free. Online. Radically. Collected. Education.

The mission: A force for good! In Italian forza means strength. To give voice across to anyone, to give strength – especially to those who don’t usually get to. And we’d create art/videos that would go with these stories/ideas/thoughts/journeys/whatever the person wanted to talk about.

We created it, together. Website, got people to provide us with their loves. wrote a manifesto. found things we thought was F/O/R/C/E-y – and then after our first video I got super sick where fatigue & pain over took my life & it lasted fucking ages, so Paul did a lot of the brunt of the work.

Time went by and then I decided that this experience and the experiences I had gained – was to be in healthcare to deal with the episetmic injustices there but also be one of the people who provide deep listening and empathy with compassion of a persons experience with illness and this treatment pathway.  I went to study radiotherapy & Paul went to Tokyo to work. We had a conversation maybe 2 years ago? Maybe it was a year ago. We weren’t sure whether we should close this project that had only just felt like it had begun, and be able to maybe do something else. I wasn’t too sure myself. Part guilt, probably from not pulling my weight as much as I would have liked back in 2012 and in 2014/5. I said, let’s leave it open. Not sure the action of closing is the right way. We did default on our website domain website payments tho. So now we lost an archive of material somewhere in the web.

And F/O/R/C/E has sat here. With cool videos on our vimeo page https://vimeo.com/user15467645 – a twitter page full of incredible links – archived stuck in a set of time https://twitter.com/FORCElectures (not sure i’ll be able to re-open this account as our email is long dead).

But I realize under this year’s events – in particular (though we did start it in the upheaval of austerity Britain) – we need something like F/O/R/C/E more than ever. We need spaces away from the oppressive & recessive histories and structures that crush voices, that tell people that their thing or stories are that that ones no one wants to hear about.

We need Spaces to document these turbulent times – whether its a pandemic or a call for equity and epistemic justice.  We want to make art with a persons talk – to show that it deserves attention.

The core of most of our problems in society today, whether its care experiences in healthcare, or Brexit, or racism, or kids not paying attention in school, etc – is that people want to feel like they’re being lustened to – and feel valued. that they have your attention. So many of us feel unheard and it’s a harm. These harms come in many forms – either hermunatically or testimonially  (predominately) – and if we keep on ignoring the and changing the structures that keep alowing such harms than i feel like it will continue to get worse.

and I think F/O/R/C/E is one of those many spaces here, and to come, to help house and store and share and platform this stuff / these experiences. It reminds me a lot of how we’re taught these days, and how systems and money is used, that everything needs to be spent by the next finacial year – that courses need to be complete in x amount of months. We give up when we don’t see results after so long. We might be forgetting the joy and the revelations in the long game – and this reminds me that we can not rush things – especially when they involve listening. For listening and really hearing are timeless.

So it’s now my turn to carry most of our next engagements/work forward. I’m going to recollect all our bits together – and the content will likely be slow and steady – but that’s because deep listening takes time. I hope you’ll follow along.

I’ll leave you with Paul Harrison excellent essay post about it from 2014 on the excellent Aesthetics of Protest site:  http://aestheticsofprotest.org/force-lectures/

And I hope you’ll give our Facebook page a like if you haven’t already F/o/r/c/e

Here’s some videos we made for peoples stories/ideas/journey/thoughts/experiences

Ashley Holmes, ‘Nothing To Lose’ F/O/R/C/E from F/O/R/C/E Lectures on Vimeo.

Yvonne Yang Guang – ‘The Stingy Artist’ -F/O/R/C/E from F/O/R/C/E Lectures on Vimeo.

 

More videos here: https://vimeo.com/user15467645

(photos from my wordpress archive in  2011, ha!)

How COVID-19 might be able to help make us more aware of how illness changes how we are in the world.

I’ve been thinking about this Guardian article for a while — https://www.theguardian.com/world/2020/may/15/weird-hell-professor-advent-calendar-covid-19-symptoms-paul-garner?CMP=fb_gu&utm_medium=Social&utm_source=Facebook&fbclid=IwAR10MKbX-9nheBZ-TebSVq3sTiS6hUltw8O96k6f2_onhqgNLYIytZNwomM#Echobox=1589621668 

 

We’re often led to believe that only a very small percentage of people get after-effects from viruses and the like. Such conditions like Chronic Fatigue Syndrome, ME, & the triggering of other issues such as IBS or Migraines. Mono can cause post-viral fatigue which is probably the virus that has it’s after effect struggles more documented than others. it is also a trigger of Lymphoma in some cases. Many of these conditions and symptoms are caused by having a normal virus. Something happens, and the body goes into some sort of overdrive.

 

I don’t know the exact medical science — but it happens. Many of you on here will have actually experienced this — some of you the affects will have been for a few unexplainable weeks – some of you for months, even years… even life!

 

But it happens a lot more than we think, it’s just because medical healthcare have gas-lit us because they don’t know why it happens yet. Or why it happens to some, and not others. Or haven’t truly investigated it. Or because it can’t be captured by standard bio-medical blood tests. And as such, it leaves a lot of the population struggling with these “medically unexplained symptoms”. With no help. Feeling unheard. and truamatized by a system that won’t acknowledge the symptoms as real – and have to go through life as if everything is normal because there is no explanation why the symptoms of flu (or whatever virus) have continued months later.

 

Not only do you feel like you’re letting yourself down, but you feel like you’re letting everyone else around you – your team, your friends – who all deserve better – down. BUT this isn’t true. It’s just capitalism that makes us feel like this. And capitalism makes us judge others who are struggling with these artefacts of viral reactions on our cells – because we’ve been brought up with a limited language, and understanding, of illness as an experience, and its effects on the quality of life and experience of it in the body outside of biomedical metrics.

 

We see the after-effects of disease covered a lot more in cancer care. But that’s only because the treatments we use can cause all sorts of lasting issues and conditions. Despite us knowing that those treatments are harsh upon the body – we still don’t pay attention to it properly. Post-cancer (Tx) fatigue ? We get told, or say it’s normal. But we don’t know why, really — when it lasts many many months post-treatment and remission. Even for life.

 

One of the reasons why we don’t talk about illness is because we can’t ever truly think that it will happen to us, or that we will be able to handle it better than another person. Once you are long-term ill, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination.

 

When you get sick – and it’s lasting effects leads way past the understanding of the disease, or past the immedate life-threatening part — Something happens to our temporal existence. Our futures fold in on themselves. It has certainly exposed itself to me, contrary to both the laws of nature and of human nature. We are not meant to be able to see into our future. We are propelled into our future, thrown into our projects with no premonition, no peeking. Our life stories are meant to unravel as we go along, at a rate of one second per second. No slower, and certainly no faster. but living in illness uncertainty gives you a glimpse of this – and it seems that people who have never been uncumbered with this kind of uncertainity, unknowing in their own body and the world around them can’t extend to understand it.

 

As such, the way we deal with – specifically – long term illness/feelings of sickness/dealing with chronic conditions – all reek of misunderstanding and lack of patience.

Illness changes everything. It changes not only internal organs, but our relationships to the body… my relationship to others, their relation to me, to my body…

In short, illness changes how one is in the world. Moreover, the world of the ill person changes; it transforms into a different landscape, filled with obstacles. Distances increase. It becomes uncanny. The world of the sick belongs to a different universe from that of the healthy, and the interaction between them is clunky, difficult, abrasive.

 

This Guardian article is written by a man, a professor of infectious diseases, so he is even more confused by this lagging – this viral aftermath of symptoms post COVID-19 on himself. He can’t rely upon his body – he doesn’t know what these flare ups are or mean — his body, once trusted – is tripping him up.

 

As I’ve said before, post-viral symptoms are not that unusual — but we’ve treated illness, and the unknown in medicine so poorly – that he is confused too. A man who understands the body in detail feels that his experience with illness without disease present – is confusing. And that’s how many of us have been feeling for years and year — especially women who are much more likely to be treated as being hysterical or somatic than their male counterpartners within healthcare.

 

Perhaps one of very limited sliver linings of having an novel virus wipe across a massive population of people is that we might begin to be able to collect enough data that can help us with understanding the after-effects of illness on our body. And what it means to live with symptoms whilst no bio-medically diagnosable thing such as having an active disease present & how this can make the experience of healthcare – and societally – more empathetic and compassionate.

 

IMG_9075

Looking For The Helpers

When we look across the world, we see a scenario that I don’t think we ever really thought we’d see. The world is shutting its doors to keep out an enemy it cannot see, smell or hear.

Now, some of us have waited our whole lives for state sanctioned introversion. One of my favourite books is the “Shy Radicals”. Yes please thankyouverymuch. But now that the option to come out of ourselves has been removed it doesn’t feel good. It doesn’t feel very good at all. Perhaps we have more in common with those folk who move through the world as if it were an amusement park. We’re just not very good at parties. But now there aren’t any parties to go to anyway.

And suddenly, I dunno about you, but I could do with a legendary house party, 1 of those ones you end up talking about for life.
None of us have any real idea of what is about to unfold, or how long this unfolding will take. Some of us are living week to week, pay cheque to pay cheque. We may be working from home, but only for as long as the companies we work for can keep going. We may run businesses that are trickling away before our very eyes. Some of us may have seen our (very small) savings – everything all those years of slog and sacrifice were meant to be worth it for – slip like sand through an hour glass in just a fortnight. Some of us may be ok. But if we don’t know what it is to come, how can we know for sure?

Here’s the thing about all of this. It’s a WE thing. Because for once in human history, every single one of us is affected and we are all in this together. And not in the way Conservative party says.

Not a single one of us can come away untouched from this – not even the millionaires and billionaires and government officials and beyond.

We are humans. We do some shitty things, but we also do some amazing things like: people continuing to be there on the frontlines to keep things moving as they should, and saving peoples lives. also we make some amazing art & music & scientific amazingness, and figured out that as well as making some excellent cheeses, mould can make life saving drugs. We also like to dress our pets up in clothes.
Right now, as I see it, we can only control ourselves. Everything else is out of our jurisdiction – but isn’t it always that way, much as we like to convince ourselves otherwise? So with that in mind, we have to sit this out. Take care of ourselves and each other as best we can. Eat well. Brush our teeth. Get some rest. Watch the bare minimum of news. Concentrate on only each day as it comes. Add gin where necessary.

Do what we can.

Those of you who can do basic lonely exploration – some how without much close physical contact- can you check in on neighbours and old folks and those who are super vulnerable? People are frightened, and rightly so – but as Mr Roger’s – the dude my friend  Colleen told me a lot about last summer – those who are uncertain – look for helpers, & those who aren’t *as* vulnerable & understands fully what’s going on or has something that is of use to other: BE the helper.

These are the moments that frame and create who we are, and how we will be looked back upon in history – And I want us to be collectively responsible (staying in, not doing anyyyy unnecessary socializing etc etc ) and being compassionate (understanding that if you go out in a massive group – you’re putting loads of people at risk/ understanding people are frightened and figuring out how to help others).

Suffering together, but together in kindness and support (at good distances, off)

In the meantime, let’s keep each other company (online and in fun creative different ways).

Stay well, and stay lucky.

Untitled_Artwork 37

week 1 self isolation down: unhomelikeness

You’re not a human doing, you’re a human being.

I’ve been following the progress of C-19 for a long time. Since around Jan 20th. I was in Japan, walking through a market in Tokyo & my American friend was messaging me how I might get quarantined on my way home. LOL I said to Hayley showing her the messages. “Americans, they’re so OTT. If it was a big thing, we’d have seen/heard it whilst here wouldn’t we?”

So we left Japan, & we weren’t checked out nor quarantined. Nothing was different. But I wish we had been. All of us coming home from Asia, 2 weeks at home & anyone we’d have contact with also kept at home. To keep it in check. Instead, here we are. On lockdown of sorts. Cinemas, cafes, pubs, restaurants, universities, and schools closed. Now, I believe this is the best thing and should have happened about a week ago given the rate of deaths we’re at (177 at the time of writing) and infection numbers of only testing hospitalized patients.

I’ve been self-isolating since last Thursday. Since before the government announcement of attempting to work from home if possible on Tuesday. I’ve been watching other countries and I know where this is going. I’m a person who is at risk. I have super bad asthma, and a bunch of other long-standing issues – that’s well documented on the pages here. So it’s been a week of only walking the dogs alone outside. Everything else in my bedroom and on Skype.

Now I’ve been working from home most of my adult freelance life. At least 2 days a week. So I should be used to it. But I will level with y’all, I have found this week really, really hard. By Wednesday I wondered why I was struggling given the fact that this was my normal activity last year.

The girl who lost most of 2012 and beginning of 2013 to insane fatigue and pain and spent around 8 months laid in bed most of the time, & when she wasn’t would just dream of being back in the bed – is now feeling trapped and uncomfortable in the same space.

I usually love working from home. No horrible Northern Rail commute, the money I save, a relaxed ease into the day. But this week? I can’t concentrate. I feel restless.  Every day I have to reassure my nan that if she takes the precautions necessary, she should be ok. And then I go back to my laptop and I stare down twitter with it’s 9 in 10 tweets about c-19. endless scrolling.

Tonight, whilst re-reading some texts for my PHD, i realized why I feel so uncomfortable being self-isolated.

It reminds me of being sick. And I am struck by the comparisons of the life people with chronic health conditions, disabilities and complex lives live every day.

I am not sick (not in the Corona way anyways) At the time of writing – i’ve been feeling the best i’ve felt in many many years recently. But I realize this lock-down, isolated life mirrors illness/injury in the same way that it affects our ability to be in the world.

Without real life interaction, even if it’s just me writing a bunch of bullshit on my laptop in Starbucks surrounded by strangers, it still feels like BEING in the world. I need some rhythm and rime, the beat of the street, i kinda need that Northern Rail community feeling to feel grounded. It gives my work the context it needs to feel tangible and real, otherwise — they’re just words on a page, drawings of things. Heidegger writes about this well in Being in Time. For him it makes no sense to abstract a paintbrush from the lifeworld of the human being in order to show that it’s mere an object made of molecules. The brush ceases to exist as brush if there is no human-being to use it.

 In other words, meaning and interpretation of our everyday ways of being in the world – underline and anker who we think we are and what we do.

Today we had a Skype with our newish Lab4Living Professor, Peter Llyod Jones, talking through his amazing catalog of varied work, underpinned by his scientific background but his understanding and need of combing art & design & all the other creative fields such as architecture and fashion to bring about the best most holistic and important/innovative works. He asked, “What does it mean to combine both science and art/design together and be a collaborator of both?”

The answer, of course, is simple: Science can in many ways explain *what* we are, but it cannot explain *who* we are and *why* we are.  We recognise beauty when we see it, we know when we feel pain and experience betrayal or joy. We don’t need technical explanations of these things in order to understand them or believe they exist.

The ubiquity of science’s usual calculative thinking can help give us a sense of freedom, and power of a ‘neutrality’ and it’s a sense of Truth. Presenting itself as the best, most sound, way of understanding ourselves and the world (it doesn’t).  So in theory, me being at home – hoping not to catch (or have previous caught & yet to get symptoms) c-19 – should give me a sense of agency in this. But bringing it back to that mirroring of chronic illness life, it does not.

When I was properly, pretty bed-bound sick – i learned fast what tending to the biological body does in medicine, it obscures what it means to *live* in that body, and what it *feels* like to be ill or injured, what it is like to experience the world differently – as ones embodiment shifts and changes.

As Jeffrey Bishop noted, Human life can not be reduced to mere functionality, without doing violence to the other features of being-in-the-world.  When you take away these contexts, or the ability to interact with it – it is a harm, a different kind of suffering.

We take for granted our interrelation of being-in-the-world, and when it beings to breakdown  – we feel like we’re falling out of our normal life. our of the world.

Whilst C-19 rages on, I made well aware of my “unstable body” – this self-isolation for longer, more necessity,  is just another sudden intrusion of the body into the everyday experiences. I’ve tried to explain in many different posts on this blog over the years about what it’s like to live in a body that keeps on changing? it can be frightening, sometimes even terrifying and always confusing. it generates this wild attention to your body that you never had before you was sick. One becomes a prisoner to any perceptible change — a cough, a lump, a pain. Predictability ends. You just grieve about the loss of it, allll of the time. Get forced to admit “new normals” when you just want the old normal.

C-19 is an equalizer in that it is forcing us to look and feel at our bodies and disruption of being in the world in the same way that illness & injury & other events do to others.

We have fallen out of the world, and most of  you have now joined me in what Susan sONTAG FAMOUSLY CALLED “THE Kingdom of the sick”.  But a lot of you aren’t sick.  you have to live a version of the sick kingdom life in order to either not kill other vulnerable people or not get sick yourself. Your way to project yourself into the world is disrupted.

And that’s what I am feeling. This wild uncomfortableness. Or kind of not belonging. An – what Heidegger called an “unhomelike being-in-the-world”. – the way we understand the world into which we know is thrown out.  Our world is no longer homelike, relatively stable. because illness (c-19 processeS) has disturbed our meaning making processes – it’s not just our body but the way in which we gain our being from/.

Having experienced serious illness – it leaves no part of your life untouched. Your relationships, your work, your sense of who you are and who you want to become, your future, your sense of life – and all these things change and it’s terrifying.

This creates a suffering.  The complex and profound suffering that is basic to the human condition – whether physical, mental, emotional, spiritual or otherwise – so something very few of us are willing to confront… fully.  It’s 1 of the reason why a lot of people have difficulty acknowledging friends are super sick, or people who are disabled continue to suffer great inequalities and injustices – because people can’t face their disruption because it means facing that it could also be them.  most of us would prefer not to dwell on the unpredictability of illness and death or the vulnerability of the human mind and body.

I feel like those who continue to keep going out, drinking in pubs having mass gatherings etc are turning away because they can’t deal with the idea of the suffering. They also don’t want to give up, momentarily, this ‘freedom’ that helps to give their world meaning and being. They also don’t want to experience what it’s like for so many people who are housebound due to social isolation, illness, and beyond.

And for me, here I am. In my bedroom. Not feeling real, not in the world. As noted many years ago, & multiple times on this blog – I have felt like I’m not going to make it to 35 (it was 30, but I got there). This feeling has been with me way before I got sick. Like with my poor background, it’s just a given. Now I am feeling it more than ever.  But with the long sickness, and now this – I have finally realized why the idea of dying without leaving a mark really bothers me. And why c-19 really frightens people.

When we can no longer project ourselves into our futures, we come face-to-face with ourselves – that our connection with the world is finite. What we’re really afraid of – is not so much the biological malfunctioning (tho that is scary) but the possibility of no longer to be able to *be* at all.

This kind of living takes away the privledges and luxuries of being to project secure and idealistic futures. It reveals the precariousness of our existences.

When I was so sick and couldn’t leave the house, it was fine because I had 0 energy. Now I’m finally getting my life back to a small part of what it was – and i’ve been thrown back into the life that sooooo many people have to live in, day-in & day-out. Without the imminent threat of C-19.

I see myself as an empathetic person, and i thought I had understood what it means to not be able to do stuff due to illness, to have your world broken and your place within questioned. But I finally think I get why it’s *so* dangerous for the elderly and the most vulnerable – who are relatively  bodily healthy – to be isolated and lonely from people, community, connection and activity. Because it breaks their being-in-the-world, it makes it difficult to ground yourself, and it feels very much unhomelikeness, within your own home.

I hope when we get to the end of this moment, that we will all reconsider how people are living and bring news way into helping connect people whose lives are already c-19 lockdown like.

ETfEKsaXkAo6TSn

 

 

What My Teeth Are Teaching Me About My Past & Politics

It’s been a while since I’ve blogged. And certainly, this blog will seem a bit more “off brand” than normal – because it’s about my Teeth.  Have I ever written about my teeth like this before? No, no I haven’t.

In fact, until around 9 months ago, I just didn’t even think about my teeth at all.

Here is a fun fact about me:  I am kind-of scared of the dentist. I know dentists are cool, great & amazingly smart and skilled people – but the environment & process of dental care FREAKS ME OUT.

I don’t know where this fear has come from. I think I learned it from my mom, who also hates going to the dentist and is probably worse than me at attending.  Until this year, my nan had to make all my dental appointments & take me because she knew I wouldn’t have done so myself.  Both my mom and I probably wouldn’t even be still registered with a dentist if it wasn’t for my nan. (Praise the nan!) And let me tell y’all, it’s HARD to get on a good NHS dentist list these days.

This is all interesting because whilst I’ve always known to brush my teeth 2 times a day, and “look after them” & reduce my acidic & sugar intakes and likes – I’ve just never appreciated the importance of what my oral health, care & history means on my general overall health.

Because I’ve grown up in a very precarious life – issues of not sure if money/food would make it to the end of the week, crappy food at school, things like stress from domestic violence & homelessness makes it so you don’t really pay attention to something that is just a given.  Because I’m genetically really lucky with my teeth (I had to have something good in these genes!), my teeth are all kinda naturally straight and normal looking. I’ve not even had any wisdom teeth yet. As such, because they’ve just been chill – i took them for granted whilst the super invasive stuff of my life took over.

I quickly learned from around age 13 that Coca-Cola was a great thing for energy. A natural night owl left me sleep-deprived, alongside having to be semi-aware for aggressive behaviour in the house.  It was cheaper than the food that would get me that same energy, so I could save my dinner money for other things I needed instead, or if there was no dinner money.  It was caffeinated & kept me full for quite a long time.  And so the semi-addiction to Coca-cola happened, and so did the true start of my poor teeth health.

My dentist at the time just never really communicated to/with me. He knew I wasn’t a fan of going to him and he could see what I was doing with my teeth – but never really broached the subject. Until I was around 18 when he told me that now I was an adult he could tell me that I was brushing away all the enamel from my teeth after consuming sugary drinks, so I should wait at least 2-3 hours before brushing. Why didn’t he tell me this literally 4 years earlier now that I had a mouth full of fillings?   So many questions & potential answers.

It was around the age of 17 that I started to feel a deep shame about my teeth. But it wasn’t strong enough yet & I didn’t understand it enough to pay too much attention to this feeling about it every time i brushed my teeth.

I started doing that, the waiting to brush my teeth, rather than giving up the Cola. Now I was a university student with no money either. Which was fine. My upbringing had prepared me for this lifestyle. Needs for new fillings became less with this new info of waiting to brush my teeth, but the dentist would opt for replacing old fillings if he couldn’t find new cavities.   But now the shame of all of this had really started to seep in.

//////////////////////////

Occasionally, somehow, people’s teeth would come up at uni. “I’ve never had a filling!” many people would joyfully announce. Some people would say, with shame, how they had to have 1 or 2 fillings, but they only happened when they were younger! Never now!

 

I’d just pretend I hadn’t heard the convo quite often. For me, my teeth were half mental. Luckily all of the fillings were on my molars and pre-molars. But there was a shame I couldn’t explain about my oral health.  It was a bit like smoking, I guess. You know it’s bad for you – but you do it anyways. I felt that if I was brushing my teeth – and coca-cola helped me get through some super tough times with lack of money and energy / good food then it should have been fine. I mean, it was just a drink & I was doing what I was told with brushing. But what I hadn’t clocked around about now, was that my uni friends didn’t have any cavities or many, and were ultra proud of this status because they had much more secure home life & came from more money than me.  It was that middle class, affluent bubble again, that comes in many disguises. Still, I knew that I was responsible – ultimately – for my teeth. Poor background or not.

Over the past years, I have dramatically lowered my consumption of full-sugar drinks like Coke. I do a lot of a ZERO & MAX low calorie no sugar drinks now.  But they’re still carbonated & acidic.

 

The last time before this year that I went to the dentist was in 2016 after I had finished Radiotherapy. One of my back teeth had cracked (from a stress clenching that my dentist never told me i was doing ). I was eating some chocolate after my last case-discussion & a whole massive chip came off my tooth and  i was due to go to USA for the summer. No way did I want potential toothache in USA so I went to the dentist where he proceeded to fix my tooth & gave me more fillings/replaced them.

It was around April 2018 – and that same filling from 2016 fell out. I told myself I’d go to the dentist as soon as I had saved up the money.  I had saved up the money but I was still refusing in my mind to get it fixed.  It didn’t hurt or anything, just annoying when food would get stuck. I kept telling myself, I just don’t have the time. I was very reluctant to pay to feel super bad at the dentist from shame and fear. I left it, whilst I kept telling myself I’d do it soon.

In November last year, I got really sick. I was running 40+ C temp, but no one could figure out what the infection was.   I went to Budapest a few weeks later for my friends birthday weekend, whilst on long-course antibiotics. We were out in a ruin bar, and it was so cold it started to snow. I was drinking a Coke (i still felt gross so alcohol wasn’t for me).  It was there where I got the worlds worst ear ache/face pain. It was proper NEURALGIA. induced by me messing around my TMJ & the cold. The panic overcame me when i thought it could be my teeth. i sat there outside checking my teeth like a crazy person but they didn’t hurt. the gums looked fine. No signs or redness of abscesses. But the pain was INTENSE.

I let that face pain go on until Jan 2019 where it was getting more and more frequent and intense.

I made my 1st ever dentist appointment (remember that my nan had done them all until now) & it had been so long since I had been that my old dentist had retired.

in the meantime between the new appointment, I started googling potential causes of the pain & convinced myself that I had gum disease. It matched everything I had subconsciously told myself about my worth & my habits. I even got my affulent PHD mates to show me their gums – and even though I’m not dentist, i knew their oral health was better than mine.

I went to my appointment & I said to the new dentist that I was nervous (he was like “why it’s just a check-up?” & I was like *I know* but still dunno). I said I had the insane FACE pain, but none of my teeth hurt. I had convinced it was an upper wisdom tooth coming through, not anything to do with the lower filling-less molar as the pain wasn’t no where near my lower jaw. He checked it all out & told me it wasn’t the wisdom tooth  but he might need to remove the fillingless tooth if  he couldn’t fix it.

(I’m leaving out the part where he questioned my dental history accuracy due to the previous dentist filling out my dental record inaccurately?! And made out that I had done dental elsewhere – what a trust exercise!?) 

 

A potential tooth removed.  I ask if it would hurt, he said the no-dental procedure should hurt. LOL LOL LOL. He said I would need a long appointment. I booked it & paid, relieved that I didn’t have gum disease.

On the day of the filling, he told me he couldn’t do it as the tooth was “far too gone”. He said he could take it out now. He couldn’t even do root canal because something had grown? I asked him if i had caused for it to get like this because i had waited so long.  He was a nice dentist though and said it wasn’t my fault. Instantly trying to help me unshame myself.

 

(i do think it was because I did leave it too long, but it was nice of him to not blame me).   OK i thought, I’m sure i can let him remove this tooth, RIGHT NOW. He was really good. He explained everything, and talked me through it all. I never knew until now that I actually had a choice in dental treatment. my previous dentist would just *do it* No real discussion.

There’s a funny story in this tooth removal process – like the fact that I had gone to this appointment on my bike- apparently you can’t ride a bike after surgery? who knew! and i wanted to go straight to work- to lecture. but i actually couldn’t talk. good times.

IMG_2889img_2888.jpg

But a root got left behind. The dentist let me keep my tooth. I don’t know why i said yes like a weirdo – but I guess I thought that since I had paid £60, i might as well keep it as a reminder.  He made me come back to him for 2 follow up appointments, which i thought was very good.

 

In the meantime, I started researching tooth stuff. And I became shook about the link between social inequality and ACES and oral health & loss of teeth.

Current dental research focuses on health conditions such as diabetes and lung disease that can be risk factors for oral health.

Haena Lee, a postdoctoral researcher at the Institute for Social Research at the University of Michigan, assessed the impact of adverse childhood events on oral health—specifically, total tooth loss—later in life. These events included childhood trauma, abuse, and, to a lesser extent, smoking.

“The significant effects of these adverse experiences during childhood on oral health are persistent over and above diabetes and lung disease, which are known to be correlates of poor oral health,” Lee says.

Lee drew data from the 2012 Health and Retirement Study, a nationally representative longitudinal study of older adults and their spouses in the United States. The study includes a core survey collected every two years and a supplemental survey every off year. In 2015, the supplemental survey asked detailed information about childhood family history.

Lee derived the participants’ oral health information from the 2012 HRS core survey and their childhood experiences, adult educational attainment, and poverty status from previous HRS surveys and the 2015 supplemental survey.

Using this data, she investigated three models of life course research: the sensitive period, defined as the time in a person’s life during which events have the most impact on his or her development; the accumulation model, which examines the effect of the accumulation of events over the life course; and the social mobility model, which examines the change in a person’s socioeconomic status during that person’s life.

Conclusion? Failing oral health in older adults, especially total tooth loss, may have its roots in adverse experiences such as childhood trauma, abuse, and low educational attainment. Findings also suggest that oral health in later life may be more influenced by accumulation of adversity rather than changes in social and economic position over the life course.

Read more about this incredible (american) study here: https://onlinelibrary.wiley.com/doi/abs/10.1111/cdoe.12463

 

After i had that tooth out & did this research – and saw why i felt shame for my teeth. They’re a sign of all the shit I’ve had to endure- abuse, homelessness, poverty, massive amount of stress and chronic illness. – it’s a record dug deep into my bones, and my shorted DNA now – that makes it look like I’m thick or that just don’t give a shit. And that my dentist of 15 years just didn’t really care about to ask or tell me stuff.

The trauma I’ve endured means I *REALLY* don’t like people looking in any of my holes where I have little control or can’t see. So that’s probably why I’m bad at smear uptakes too.  So it’ has helped to tell the new dentist I DO NOT LIKE this. And he explains everything now. (I also told my dr I wasn’t a fan of smears & she made them better too)

AFter the tooth out, I have become a bit obsessed about trying to look after my teeth better than I have ever done in the past. Plus, I have a bit of money that i can spend on this stuff now – where as 2 years ago I couldn’t even buy a general food shop. 

(i’m still drinking carbonated drinks – ooooops) But I bought my first ever supersonic toothbrush. WOW. Here’s another reason why poor people tend not to have brushed their teeth correctly – electric toothbrushes are INSANE & you can feel the difference.  And my teeth LOOK whiter!!! FOR REALS.  Now of course, we know that electric toothbrushes are obvs a defining difference between folks with flexible incomes and the poor (for those of us on a megabudget but enough to buy a new electric toothbrush – this is an amazing tooth brush for £21 https://www.amazon.co.uk/Electric-Toothbrush-Fairywill-Charged-Rechargeable/dp/B07M9ML7XP/ref=sr_1_3_sspa?keywords=sonic+toothbrush&qid=1563721336&s=gateway&sr=8-3-spons&psc=1 )

But this toothbrush came with instructions of how to brush my teeth & it’s timed. I thought I was brushing my teeth for 2 mins. Turns out I really wasn’t. And I didn’t know of the correct technique? 

I started really routinely flossing my teeth, but I had to watch youtube videos to help me learn how to do it properly?! Turns out I only know how to floss from TV & movies – and they just slosh some thread between your teeth. Which is alright – but it’s not the good/correct way to floss!? WHO KNEW? Why has this never been shown to me before? Apparently, you’re supposed to almost wrap the floss around each side of your teeth. Makes sense now I think about it!  I found Dental Hygiene with Whitney (Teeth Tooth Girl) – who is pretty amazing. She makes dental health look cool, fun and easy. Here’s a video of atalk through a dental cleaning (in USA): https://www.youtube.com/watch?v=uTiC467dwUM&list=FL3F7cPjI9Wp7P1uf9RTl8JQ&index=9&t=0s 

It’s wild to think I’m having to find how to do  this stuff ONLINE – MANY years later.

This mouthwash is gross but it really makes your gums amazing: https://www.corsodyl.co.uk/products/corsodyl/mouthwash/ And now I can eat ice-cream by biting into it!? I’ve not ever been able to do this for as long as I can remember without it hurting.

I usually chase it with it’s nicer tasting mouthwash: https://www.corsodyl.co.uk/products/mouthwash/ (fresh mint)

Though I’ve been using this recently as it was on offer and it’s like setting your moth ALIGHT lol. https://www.listerine.co.uk/products/fresh-breath/listerine-total-care wicked fresh breath though.

My dentist helpfully showed me this lil baby cute tooth to help brush hard to reach areas too : https://www.amazon.co.uk/Wisdom-Interspace-Super-Slim/dp/B01NB08GMX/ref=asc_df_B01NB08GMX/?tag=googshopuk-21&linkCode=df0&hvadid=310836173466&hvpos=1o2&hvnetw=g&hvrand=11693902512502109974&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9046280&hvtargid=aud-545671390501:pla-563452080186&psc=1

This past week, I got to see a MAXFAX doctor for the root of my tooth. And what i found out is another blog post for anyone struggling with facepain, TMJ, ear ache & chronic headaches. So come back for that.

BUT why did I write this post?

In my research I learned that Kids, after virus’ in the UK, the 2nd highest reason for hospital admission is due to tooth decay.  I’ve just had to find out how to properly look after my teeth, like technique, materials, length, etc – myself because no one was able to actively show me when i was growing up. Not even my dentist.

I’m working in Public Health & lots of my contracts tend to be about healthy active lifestyles – and yet i’ve come across very little in my research and events that I attend about this HUGE lack of compassionate & fun dental public health care. When i looked into the funding of it, it’s basically VERY VERY small. This isn’t fair & it isn’t right.

I feel ashamed about my oral health and there’s so many people out there like me. But i just wanted to say – don’t feel bad about it. It’s happened now,  I can’t help all the shit situations I have been in. But it doesn’t mean everything else around us has to pretend our painful lives don’t exist. lets get better going forwards. Lets take the stigma out of this stuff, because we’re not doing a very good job in the first place in ensuring people have the right knowledge to begin with, they can’t access to some of the better tools to help do it well and dental practices & research needs to be better at assessing a more holistic approach as to why people are doing things which might be bad for them, and help them with it. Rather than pretending it’s not there or the person just doesn’t care.

If you got to the bottom  of this post, you probably needed to hear this too.

Let’s change make dental public health higher up on the agenda

 

 

 

Expect anything worthwhile to take a lot of time

Yesterday I went to the Drawing Matters Symposium in York. It was a day of inspiring talks and presentations, all grappling with drawing and its pros and cons. I even met a couple of healthcare professionals (a nurse & a physio) using drawing in their PHDs – as a critical tool too, not just a “wellbeing” tool*

There was a particularly interesting talk from an educator about drawings role in primary education, and how a lack of teachers understanding of drawing and time to do it/teach it (all documented in Ofsted reviews every 3 years) is affecting how people later on in life construct and evaluate knowledge. This then, of course, systemically affects every area we work in – from government policies, to leadership, to how things are designed.

They also showed how drawing also helps bilingual kids learn english. So drawing can help bridge across two different languages, two different paradigms. Enhance collaboration and share practices!

But the knowledge thing got me thinking about the healthcare system.

I’ve been trying to make things to help showcase people’s work within radiotherapy & beyond and I’ve been *secretly* developing  a framework/workshops to teach healthcare students (maybe even staff) to be and think creatively.
The workshops are designed to be facilitate hands-on activities and discussion designed to build 4 essential creative muscles:

  1. Seeing connections between disparate concepts
  2. Developing an openness to new ideas
  3. Building resilience through experimentation
  4. Authentic reflection

These 4 things goes beyond what most people think of when we say creativity (no, it’s not just drawing, and it’s not just being “different”). In business, the creative mindset is highly sought-after because in this time of incredible uncertainty and rapid change, we need agile thinkers who can recognize patterns and interesting adjacencies, who naturally come up with person centred solutions not rigid-1-fits all master plans, and who are comfortable conducting rapid experiments to learn quickly. But it’s not as much appreciated  in healthcare, despite needing the same kind of things as described above.

But alas,  both healthcare and creativity is complicated.

For years, researchers have studied the “bias against creativity” in the workplace. University of Pennsylvania researchers coined this phrase for the tendency of creative ideas – and the people who espouse them – to be systematically diminished, disparaged, and discredited. This is interesting stuff. I’ve personally experienced it at school, across many places I’ve worked, including within the healthcare system too.

In recent work from Stanford Institute for Economic Policy Research, economists took a novel approach to innovation research by matching tax data to patent grants and applications for almost two decades in the US. They found that children of parents in the top 1% of the income distribution were “ten times more likely to become inventors than those in the bottom 50%.” This is significant, but perhaps not that surprising. The fact that you’re more likely to be successful if your parents have money isn’t the classical narrative of the American dream, but we know it’s true. This data is reproduced across the UK too.

The real surprise in the research was that invention was not correlated with creative ability. Instead, the degree of successful invention was more closely tied to environmental factors shaped by race, class and gender. The conditions children were exposed to at a young age in their neighborhoods and schools were the dominant factor in predicting future success in innovation. In other words, if children didn’t see members of their family or community engaging in non-traditional, innovative pursuits, the financial barriers related to access to opportunity were virtually impossible to beat. It didn’t matter how naturally talented someone was if they had nothing to model.

This makes me think back to the healthcare system and the transformational leadership role and HCP ability to enact change – whatever band/level/experience they have.

“Creativity” may not be the magic bullet – but creative people are. We know that intentionally or not, we are teaching the next generation how to be good foot soldiers, but not independent thinkers. More confoundingly, we know that the things we design (whether policies, products, systems, services, pathways, leaflets, etc) we will use in the future to communicate and convene, work and drive and govern will be built by a cosseted minority who have great access, but may not have the greatest ideas. And even if they do, they will not represent the diversity that they could have.

The experience of engaging in the creative process is profoundly transformative for people, especially young people. Moreover, it’s something where each of us can have outsized impact, just by simply being present.

So how do we do this?

First step: embed it back into education and learning.

Organization design – the attempt to structure systems to produce the outcomes we want – has been an established field for decades and healthcare is an amazing example of this. But here’s the thing – if you step back a bit, putting the two words “organization” and “design” next to each other is actually quite contradictory — the historical rigidity of a typical organization, next to the inherent complexity of the humans in that system, combined with the fluidity of design.

The healthcare paradigm is a tricky thing to navigate. It’s so ensteeped and rigid in empirical  data and conservative methods that it’s hard to move things. Each coupling reveals a tension between chaos and structure; linearity and the non-linear; closed and open systems.  Teaching people to be flexible and open – and fun – will show them their potential and feel more confident is being more critical and open about their world and collaboration around them.

Step 2: We need to Challenge the world around us.

At the 99U Conference, Liz Jackson, founder of the Inclusive Fashion + Design Collective said: “You never see a person on a cycling sign. You see one on a wheelchair sign. You’re saying you can’t use that object unless you are that person,” as she strode the stage with the aid of a cane. “We are disabled not by our bodies but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand.”

The stuff we ignore, or don’t try and change, creates our world – makes it harder for us to do our jobs, our lives and our patients lives. So by giving people the tools to critically think, to be open, to try stuff, we can literally make a difference. Equally, to repress what makes us unique is to artificially constrain all the potential we have to offer. 

Step 3: Learning different ways of thinking to see from different perspectives

This is where a creative education works. Sometimes we all need to step back—be an artist or a healthcare manager— to find the most appropriate methods or  solutions for the problems. You don’t have to do everything yourself, and it doesn’t always have to be a questionnaire or RCT.   Equally, we need to  increase awareness of our biases (which we have MANY in healthcare) and begin to advocate for change, Norregaard recommends creating a space with your team where it’s okay to talk through our biases.

Step 4: Believe in the learning loop.

We teach reflection well in healthcare, but I’d argue not in a way that’s super conducive to working life and transformation. We know that hospital Trusts that are transparent and have an open culture to mistakes, make less big mistakes overall, and have higher quality care outcomes. This isn’t by mistake. Reflecting upon what you do, enables you to work out where things can be better. But the trick is about making reflection natural, critical, authentic – actually empowering and enjoyable and  not like a chore, it’s tick box excerise for just your license. Creative thinking does this.

 

However, even with all of this – we know culture doesn’t change over night and there will always be people high-up that can not see the benefit in such things. Expect anything worthwhile to take a lot of time, but in the meantime – the artist in me has taught me that if you don’t or can’t get a seat at the table – just bring a folding chair.

Having ideals is like having a compass that always points to your heart instead of your brain. If anybody wants to keep creating they have to be about change. Likewise, if anybody wants to be about change, they need to create.

 

 

(*side note: I believe the arts are incredibly important in theraputics however that’s a whole different debate). 

we are the difference in the world

Tomorrow, I leave to go to Krakow, Poland with my bro & his girlfriend. It will be my 2nd time there. I can’t wait to eat more proper Polish food!

But I won’t be here in the UK for the last bit of the General Election campaign. I’ve spent a good few weeks knocking on doors, writing much too long facebook posts trying to debunk Tory lies and records for people, endless retweets, lots of leaflet posting. So, I’m both REALLY REALLY nervous for 8th June, but i’m also welcoming this social media break – where things can become a bit more distant.

So I write this post here, to ask you to consider helping Labour, or voting them in 8th June.

Last Monday, I was invited to the Houses of Lords reception to give a small speech. I was invited by Lord Professor Robert Winston, for Sheffield Hallam University – to talk about the “Hallam Difference” and what I think this is, and what it has meant for me.  (File this under UNBELIEVABLE SMIZZ MOMENTS)

I talked about my challenging upbringing  in poverty, that ended up including fleeing from domestic violence and homelessness. It included the low self-esteem I had ( & still have to be honest), the crushing imposter syndrome, the failing school *at the time* I came from to get to university, how I was the very first person in my family (& still am) to finish school and then go onto university and then later on after everything started going well, falling poorly and everything getting messed up again.

But within this was support networks that stopped me from falling into real despair, or getting lost in the cracks in the system. Hallam has outreach teams who worked with me to get to a university, a Labour government at the time had funded 1oo’s of policies and projects that stopped my life from being increasingly worse – such as Aim Higher, EMA, Sure Start Centres — all helped me stay on at school. Policies that helped my mom financially, a few more council houses that we don’t have at the moment (though it was bad then too). Maintenance grants so I didn’t end up in MASSive amounts of debt from university.

And once I got to university – the people made it everything. Hallam gave me the environment and the belief to build my confidence, to make friends for life; it made me feel seen / heard for the first time in my life. I felt like… I kind of… fitted in…. I was able to see a future for myself for the very first time in my life. Rather than just living day to day.

I was able to fulfil my whole life’s dream of being an artist and working in NYC in an amazing gallery, no less, with truly amazing people who became my mentors & inspire me to be better – and work with families of all kinds in Boston, doing art stuff – and when I fell sick, they paid for all of my medical bills when I was over there. Literally, they all came together to help to save my life.

When I came home, and I was angry at myself for becoming sick… for becoming broken… and not knowing how I could stop it, I just couldn’t figure out how to fix myself… my life had to be changed to adapt what was & contines to happen to me – and I was NOT happy about it. This jarring experience was eased when I met incredible NHS staff who helped me feel heard and understood in a way that really touched me. I can’t put into words how compassion makes you feel when you’re at your most vulnerable.  And I realized I wanted to take all of these experiences, use my own skills, and give back that time and kindness to the NHS and its future.

And Hallam was there for me again.

I got to tell a whole room of important people  at the Houses of Lords – people who can make a difference – how hard it is to get to university from precarious backgrounds. And just how my life has been transformed by these experiences.

I wasn’t sure how it was going to be recieved, but afterwards loads of  people came over to meet me,  and would share their stories of humble beginnings too. Which showed me there’s power in vulnerability sometimes.

But Why do I tell you all this? And what’s it got to do with voting and how we cast the vote?

Well, I’ve learnt that too often the world celebrates good heart without acknowledging the pain and hurt that shaped a person and their direction. Life may throw a thousand harsh storms your way but sometimes (not always) we can use them to grow and be better and be more good from it all.

You will be lost and unlost. Believe in your craft. Believe in your heart. Believe in your ability to become whatever it is you want to be and to overcome these challenges that lay ahead for us.

But we need OPPORTUNITY to help us to get there. we need support, we need networks, we need friends, we need hope to keep going – we need to be seen, and *really* heard.

And I genuinely believe that this Labour Government can DO IT for us. A lot of people are merely existing in the shadows. When I go convassing, some people say they’re not listened too – but here I am. Here is Corbyn – with a really truly compassionate (& costed) manifesto that really, really looks and understands some of the issues and problems and solutions to a myraid of issues within contemporary society and in all of our lives.

As my friend said tonight, watching Manchester Live makes me wonder at what point our counter-terrorism strategy finally evolves to include a massive investment in culture and the arts…

The Hallam Difference is a domino affect. Every act of kindness, I try (though sometimes I’m accidentally a dick) to pay forward. Every little action is big when we come together. Keep pouring your beautiful minds and hearts into what is right.

This week is a good week to flaunt your awesome. To show the world we’re compassionate, that we believe in people and not corporations.

That we are the difference in the world.

I will be watching the election progress from Poland at night, and I’ll arrive back to England to Exit Poll news. Let’s hope it’s better than 2015 – though as Ed Miliband said to me on the phone yesterday, “It’s the hope that really crushes you”.

I can’t cry again about another General Election outcome.

18622486_10155064070551508_622901385659812572_n-118221922_1517658601586429_4659177885555474145_n

Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

canada.jpg

 

The things I’ve learned from a broken mirror

Saving a life doesn’t change the world, but for that person, the world changes forever.

I’m right at the bittersweet end of my 3 years of  BSc Hons radiation-oncology school training. Assuming I pass the last few things, in 3 weeks I’ll be technically allowed, once my HCPC registration and license and indemnity insurance comes through, to plan, care for and treat people who have cancer with radiotherapy. Which is really scary. I will be responsible and liable by law for the safety of my patients.

And yet, the 3 years has gone past in a whirl-wind. It has been both long (no thanks to working clinically all through the summers) and extremely fast. Energizing and completely ball-breakingly fatiguing. A mixture of: I’m not ready to be qualified yet to I just want to do the job, already! Slowly ticking off endless assignment after endless assignment. Slowly being able to reflect upon how far we have come.

And now I write this post. With a cool raspberry lemonade in one hand, I stare out of the window with the sun in my eyes and feel kind of relaxed for the first time in a long time.

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

A few years ago (y’all know the story), my original life had become broken by ill-health and everything changed.  No one should ever underestimate the lack of quality of life living with horrible, endless, chronic pain and fatigue offers.  And as a result, my old life just didn’t fit in the same way anymore. So, after drawing people wanting to change the NHS to make it better using their health experiences, and this personal medical experience of mine – I decided to give up my planned life of being a full-time artist and retrain in healthcare (with the perspective of an artist). This was because I needed to get closure, to understand the human-body, to gain some control from this knowledge, and a routine – to try and ease the fatigue (that turned out to be a LOL – there’s no rest in healthcare): but most of all, my biggest motivator was  to try and make a difference and really care for others.

This was because the NHS was the first place I had been shown any real true kindness  from complete strangers when I was at my most weakest. I felt (& I feel it even more now than ever) this pit of gratitude at the bottom of my stomach when I think about the care I have been given & continue to receive – from everyone in the NHS, not just doctors & HCP but to the students, receptionists and porters, ect.

From my GP (the awesome Dr. Marco Pieri) who would say we’re friends. And in the beginning, I thought that saying we were friends was weird.  I was suspicious. It’s just his job? I knew nothing about him.  But as I grew older with him, and cried on him when I was at my lowest (i don’t ever cry in front of people), and moaned, and repeated the same endless complaints at him -much to his dismay – he built up this incredible knowledge about me as a person – not just what was wrong with me. He asks me about my work, my life in general and about my fears. He asks me what I want to do in regards to my care and he gives me lil’ prep talks (even unsolicited NHS job interview advise) by telling me to keep going and just to live life to the fullest (fo’ serious). He was one of the first people I told (by chance) that I got this awesome fully-funded PhD scholarship. He stopped me from jumping around from random GP to GP, because I didn’t understand the importance of continuity in care at the time. I feel like he intrinsically cares – not just for my wellbeing – but for the whole population of Doncaster after discussions with him on his passion for improving life expectancy & outcomes for the Donx to meet the rest of the population (thus his role as a clinical lead in the Doncaster CCG).

It turns out that he is in fact both Physician and detective, and through time, he also became both healer & friend. And through experiencing a lot of his kindness, his humor, his knowledge, his time & care – I felt like I needed to return it.  I wanted to be that person he was for me – for my patients; to make them feel cared for and valued. To not feel insignificant when you’re at your most vulnerable.

What I’ve learnt is that patients have been my best teachers, but some of my lessons have been painful.

I  have learnt from their  incredibly life affirming stories of hope, humor, achievement and tragedy and heartbreak. There was a woman whose volunteer hospital transport driver turned out to be her long-lost niece – found and reunited together through daily drives to & from radiotherapy treatment. I’ve treated gold-medal winners from the Olympics 50 years ago, pilots, magazine publishers. I’ve seen people go home and back with nothing but the clothes on their back- for 7 weeks, heard stories of amazing neighbours and learnt a lot about people’s pets. I’ve heard horrific stories that just needed to be told and heard – of death, loss, and abuse. Every day is a day where I take at least someone home in my head. Some fade away, eventually. Though 3 years on – there’s some patients who are etched onto my mind and I don’t know why some really stay with you.  I stopped checking up on them post-treatment because quite a few have died since- and it makes me feel incredibly sad. These people who we often just shared 2 or 3 weeks together at 10 mins + at a time become significant to me. And  I hope I never loose this into qualification.

 

It will be weird not being with #teamleeds, every day; My friends who we’ve gone through and seen a lot together. These stories bound us together. They’re like brothers and sisters now. I imagine this is kind of how joining the army feels, but instead it’s a healthcare course.  It will be weird not joining in on a random Facebook conversation, not having to panic about the endless deadlines and  unclear learning objectives. My closest friends (most of them younger than me) on the course have taught me a lot about growing up. I’ve managed to have a second ‘coming of age’ experience through being good friends in their journey. We’ve travelled when we could together, hosted parties and feasts of food. Shared and supported each other through tragedies, deadlines, successes and the crazy profound things life throws at you. I am completely in awe of these now 21 year olds who are mature before their years. And I think about how their strength is true testament to how I’ve managed to get here – 3 years on. At the beginning of the course, we said that we would drag each other through to the very bittersweet end. And here we are, 3 weeks to go, still dragging each other. I’m pretty sure I wouldn’t be here now if it wasn’t for them, egging us on.

Then there is the staff at the place where I’ve trained, they have been incredible. They’re passionate about education and patient care and safety. They love radiotherapy. They’ve shown me time, enthusiasm and exactly what being a compassionate healthcare professional should look like. I’ve learnt how to ask questions, without being too leading. I’ve learnt to hear for things not actually said, but implied, by patients so that I know if they need more extra support. I feel incredibly indebted to them for their knowledge and time (and patience!). I hope that we stay friends at the end because they’re such great fun people. And I can’t thank my tutors enough for all of their guidance and knowledge in helping me shape me as a healthcare professional!

What I’ve learnt in my Healthcare education (both officially and as a patient) is that everyone in the NHS has a reason to do what they do: It’s almost never about money or our quality of life. It’s because we can make a difference. All any of us ever want to do is to make other people’s lives better. Sometimes it’s life-changing, sometimes it’s something much simpler.

Sometimes things don’t work the way we should. The system isn’t perfect. Neither are the people in it. But it is fundamentally decent and good and whole. That’s why I am absolutely committed to the principles, to the ideals of the NHS. I think it’s just about the best thing this country has ever achieved. It is remarkably robust, but the pressures facing it are immense, and there are few easy solutions. But we – the people of the NHS – ALL STAFF- are absolutely committed to it.

What I’ll always remember from my education in radiotherapy – and that crazy 3 years of unpaid labour – will be the stories that made these people into NHS.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  I’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

Life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And life can be incredibly short. So see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

Thank you to the whole of the NHS for your love, and kindness, and education. It turns out studying Radiotherapy turned out to be WAY more than just a degree at the end. 

I have learnt, through pain,  that I am more than my pain, more than what was built & burned, more than all I’ve lost. You will get to build again. And if you’re lucky, you’ll get to share this adventure with the people who’ve helped you.   Remember it ain’t always about where you start, but it’s about where you’re going and end up.

To the last 3 weeks!

13012868_1156401094378821_8448868135841666435_n.jpg0-4.jpg

0-5.jpg *Hope I pass!*

 

 

Tomorrow belongs to those who can hear it coming

I recently received some incredible, completely surprising and insane(-ly good) news. 

As previously written on a few blog posts, I had applied for a PhD – not ever thinking I’d even get shortlisted, but I was happy with the learning process itself. Pushing myself forward, keeping my options open.

Before I fell poorly, and my life got all shook-up, I had an art practice-led-PhD proposal on my desktop for about a year. I wondered if I would ever be brave enough to submit it.  It was – at the time – something not super well researched. It was about Artwork and labour, and the dark-matter of the artworld – I was hoping to build upon my peers and artists who I greatly admire’s work – such as Gregory Sholette’s political activist artwork, like 1980’s PAD/D and his thesis on Dark Matter (which is one the best books ever on the subject IMHO); William Powhida’s  incredible practice on the Artworld power and structures; ARTWORK by Temporary Services; AREA Chicago’s work (that I was so lucky to have been an intern there in 2009 in Chicago, USA – under incredible people), Olivia Plender, Charles Avery, Tino Segal, ect ect.

 

But something didn’t feel right about this proposal.  Part of it was the proposal itself, and another part was probably my self-doubt, was I smart enough to do it? Could I justify my proposal?  And so I never submitted it. It didn’t matter much anyways, because the shit-hit the fan and the months proceeding this – my perspective changed after my life became obviously more temporary than I had imagined at 23/4. And I was left,  broken. My plans, my lil’ confidence I had left and my future-vision even more broken.

Art & Labour  became irrelevant to me, and with the recession and the popularity increase in socially engaged practices (yay!), my once some-what original PhD enquiry into art and labour became hot-topic. Diminishing any hopes at looking at it in the future.

I’ve never recovered from this illness experience. And I felt like I lost a part of who I was. For both better and for worse.

 

My desire to do this art & labour PhD got replaced  by my desire to change healthcare practice for the better. To make the patient pathway better.  As described many times before in these posts – my personal experiences mixed  with having this intuitive feeling about art & designs possibilities in creating a better healthcare experience and system – whether through designed medical devices (think IDEO), to architectural planning of spaces, art-therapy, using creative ways to map the patients experience or journey to generate things, to app-design and virtual reality. The possibilities are completely almost endless. It’s so exciting, but I also don’t think culturally we’ve got there to accepting it as one of our best tools (of many) to make things better.
So I re-trained, in radiotherapy & oncology to help me be part of the system to make sure I always listen to our patients and I felt that radiotherapy was this area that’s open to innovation.  And I’ve had a blast. I’m actually really good at what I do, who knew? I sometimess get 98-99-100% in my assessments, and I often get compliments & recommendations off my patients about my care, not too shabby for someone without any science background. I’ve learnt a lot about myself in this process, and built my knowledge and skill set further. And I feel such a good part of the teams I work with in the clinical setting.  But it has been ridonkulously hard. There’s no denying this. Especially whilst trying to juggle part-time work, and crappy health-issues. It’s been a battle. A healthcare course really tests you, and your resilience.
 

I felt that being an artist, I could use all my criticality skills and creative abilities to make this change. I felt that art had a place here.And i’ve flexed it out:
I made the first ever radiotherapy patient info app & won a bunch of awards.
I made the A-Z radiotherapy handbook comic
I made the faces of healthcare website of stories
I made an interactive radiation oncology revision group using twitter, storify, google docs and tumblr.
I made the first ever student-led conference dedicated to radiotherapy & oncology.
And a bunch of other things, which you can see here: http://radiotherapysmizz.tumblr.com/

 

Then I saw a call out for PhD proposals.
I was amidst in applying for radiotherapy jobs. I had been told that some of my ideas were “just too ambitious” in my first rad job interview, and then a few weeks later an informal chat with someone who previously worked in clinical-practice told me that: “I need to stay within my band, it’s not a band 5’s role to think of making things better”. Which started to give me a sinking feeling.
I’m a true believer in transformational leadership – whereby everyone – whether a porter, or service user, or volunteer, or student, or band 5 or band 8 HCP – can suggest an idea to make things better – because they’re the ones who experience the system in their way. And may see it from a different perspective – and that we all have equal responsibility: to practice safe and compassionate care. And to work together – effectively and collaboratively – to make things better. It doesn’t matter where you stand. As Judy Hopps says in Zootopia (AN AMAZING MOVIE THAT YOU HAVE TO SEE!) “Life’s a little bit messy. We all make mistakes. No matter what type of animal you are, change starts with you.”

 

So, I emailed my amazing Radiotherapy professor – Heidi Probst – and told her how I really saw creative practice/methodologies as a way to make change in healthcare. She instantly helped me out, said she’d be willing to talk through things. She pointed out her call out for breast/trunk odeama  (something that had come up with my app with a previous patient who was on an award panel – as I hadn’t included it in the side-effects – showing specifically why this needs to be researched as we’re not really taught about it in practice -i hadn’t really thought about it) and the quality of life issues associated with these patients – and we discussed how a creative way would be able to bring out these narratives – in a way that more well-known scientific qualitative methods aren’t able to do. To really make the people heard.
 

Sheffield Hallam has a unique research center called Lab4Living – it’s this super cool place that combines art & design practices to healthcare research. It’s a collaboration between art & health & wellbeing. So I saw this proposal sit right in the middle. A collaboration – and interdisciplinary investigation – with an outcome of a rich diverse narrative in many visual forms – it would be both art and health. I was advised by a bunch of academics to submit it to both departments – both art & health – because it was both, after all – and I felt that I’d do the same kind of work where ever I was based. So I did. I submitted the same proposal. Not expecting ANYTHING in return. No shortlist. Nothing. Just this increased knowledge that this massive gap in patient information and care exists for breast/trunk odema.

And honestly – for about a month – I thought of nothing more other than the plight of these people. I began to see people with trunk swelling on their posterior thorax with no advice in clinical practice. And this whole experience intensified something. Like when my eye doctor gives me option “1 or 2” when he sets my prescription, I suddenly saw option 2. It feels like it has heightened the stakes somehow -— reminding me repeatedly how precarious life is, and how every act is a contribution to a finite set of acts, that should be contributing to a bettering of the world (in whatever form that takes). Thinking constellations and not just stars.

Then I got shortlisted in 2 departments – and I panicked. I never envisioned this to happen. in-my-wildest-dreams!

So, after feeling like I was betraying both departments – I interviewed in both departments – each time feeling like I had let myself and the people who had given me this chance down. Both departments asked for 2 different kinds and types of presentations. PhD interviews are really hard to judge! I expected my chance to end there.

I don’t really know what happened in between.

There’s a quote that I’ve been thinking about for a long time, about having to let go of our planned life, to allow us to get to the life that’s waiting for us.

And when I fell sick, I let go of my planned life. And I went into radiotherapy but for a long while i just didn’t know what was waiting for me. And that has been one of the hardest parts. I now feel like maybe this is what’s been waiting for me. This beautiful combination of practices – both creative and health.

“You don’t understand anything until you learn it more than 1 way.” —Marvin Minsky

After much soul-searching. And I mean, really soul searching. I decided art would be the best place to sit – for the freedom. Though this decision did not come easily.

Getting this fully-funded PhD scholarship in art feels like I’ve come home. I’ve been lost, but I’ve been found. Changed but not fully forgotten. For a few years now I have been caught up between all that was and all that could have been and be. You feel lost.  As soon as the bones mend, you forget about the fracture, but you don’t forget that experience that lead to it.

It’s a bittersweet moment because I wouldn’t even be here if it wasn’t for Heidi’s help, and I wouldn’t even be interested in making healthcare better through creative methodologies if I never fell sick in the first place.

My great friend Magda pretty much sums  up the bittersweetness perfectly with her quote to me: “Life sometimes gives us lousy hand of cards and we play it like it was fucking aces!! that’s what we do.” Someone make this into a motivational poster.

It is at this juncture that I want to REALLY thank all the people who has made this possible – a reality- Heidi, Alex Robinson,  Jo Doughty, Laura P –  all the people in art – Becky Shaw, Kathy D, Penny M, Claire — so many, many other people  – ALL OF MY FRIENDS & my mom & nan & bro – for all of your help. For taking a chance on me, for believing I could do a PhD, for inspiring and advising, for your belief in making healthcare better. For hoping for a better future for these patient. For all the talks, for all your time, supporting me. For taking a risk.

I am endlessly grateful. I know I wouldn’t be here now if it wasn’t for these people. I never take anything for granted and I feel like I can never repay y’all.

For everyone whose had a dream, and for all the working class kids who get told they can’t even make it to university — this is for you. We can do this.

Tomorrow belongs to those who can hear it coming.

My new chapter begins in September. And I am SO nervous.

No risk, No adventure.
To innovating healthcare by focusing on people & their experiences!

Your good friend,
Hopefully, future Dr. Smizz 😉

PS: my radiotherapy career isn’t over either.

 

 

unnamed