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.

 

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Tokyo makes you a person who waits (photo essay)

Tokyo – a metropolis of dreams. It exists in a haze of past and future, quiet and super busy, organised and chaotic. The super-mega-troprolis is home to more than 35 million people: The biggest city in the history of the world. Put that into context for the UK. We have an overall population of 66.8 million. Which would be half of the UK population is living in Tokyo metropolitan area.
Despite a huge population, and what you see on TV – it never feels insanely busy except at the world famous touristy spots or the super-peak time on the subway/train. Outside of this – it often feels like it exists *just* for you.
Warrens of streets and alleyways – one leading onto another, never ending, but at the same time you are hoping that it doesn’t end either. Each area has a creative and beautiful type of lampost/light shade. The city exists in layers. Like a complex photoshop file. There’s basements with basements, shops with lifts that takes you to secret bars, there’s the odd door way that leads you to something you would have never guessed. Streets lead into shopping centres, shopping centres lead into arcades, arcades turn into parks, parks turn into temples, temples into houses, house into garages, garages into the best ramen you’ve ever had.
You could just walk one street in the centre of Tokyo of half a mile for half a day and you’d likely never find everything there, or expect to find the stuff that you do.

There’s a store for everything. If you can’t find it in Tokyo, then it doesn’t exist.

Here I can get the amazing Hawaiian drinks we drank for super cheap in Maui but are basically unavailable anywhere else on any mainlands. I can find any stationary available anywhere in the world here, but so much I can’t ever find in the UK. There’s shops dedicated to just the soul beauty of the pencil or a place that only sells lucky cats. There’s stores dedicated to the selling of things you need to make your own temple, small tiny spaces covered floor to wall & even ceiling with any kind of electrical lead/wire/bits & bobs you can imagine. Anything you want – Portuguese tarts, New Zealand s’more cookies, British pub food, worlds best burger, worlds best ramen, worlds best chocolate – Tokyo has got your back. And this is even before we get to the stuff that really matters – places dedicated to making paper, places securing 1000s years of tradition and passing it on, the way that everyone cares for the city – you could drop your sandwich on the floor in the middle of the street & it looks so clean you’d probably pick it back up and continue to eat it.
I don’t think I have ever seen a pothole in any of the roads of Tokyo. I’m not sure I can say that for anywhere else I have visited.
It’s in Tokyo that I realise that I am a person who waits. There’s a lot of queuing. More lining up than here at home in the UK. Lining up for ramen, lining up for the train, queuing up for a shop. Every few minutes, the noren curtain hanging in front of a door would twitch, discharging bodies into the Tokyo dusk, and we would steadily shuffle forward.
I am not really a person who usually likes to wait for things (thus my clutch onto Amazon Prime despite knowing how unethical it is). At home, if a friend suggests a meal at one of those tremendously cool restaurants that doesn’t take reservations, I’ll agree only if we eat geriatrically early or owlishly late. I politely reject any brunch plans that involve putting our names on a list and then hovering on the sidewalk for two hours.
It’s impatience, I suppose, but also a sort of brutal rationality: On one hand, there’s the value of my time, and on the other, there’s the value of whatever’s at the end of the line. The latter never really seemed worth that much of the former.
Public space is scaled so much better—old, human-sized spaces that also control flow and speed,” Dixon notes. In Japanese cities, people are accustomed to walking everywhere, and public transportation trumps car culture; in Tokyo, half of all trips are made on rail or bus, and a quarter on foot. Drivers are used to sharing the road and yielding to pedestrians and cyclists.
But here we were, H, R & me at that moment, 14th,15th & 16th in line waiting for a highly rated Ramen place – down a nondescript alley, just around d the corner from a super expensive department store in Shinjinku. Surrounded front and back by locals, part of a neat queue that snaked out the small restaurant’s entrance to the curb, where it broke for the tarmac only to pick up again around the corner onto a busier street. Every few minutes, the noren curtain hanging in front of the door would twitch, discharging bodies into the Tokyo late morning rain, and we would steadily shuffle forward.
We were there to eat 1 of the best Tokyo Style Shoyu Ramen, the specialty of the tiny restaurant after walking in the rain through Shinjuku Gyoen. The place is presided by a few wiry ramen masters who are all rocking a blond, boy-band coif, who dances around behind the counter, boiling and draining and plating their food with the percussive flamboyance of a flair bartender. Shoyu is a type of ramen made with chicken stock and shoyu is mixed with dashi to produce the unique Tokyo style Ramen. Tokyo Ramen is usually served with Chashu, Kamaboko, half an Egg, and is topped with chopped leek and preserved bamboo shoots.
Once it was our turn at the door, we make our orders on an old machine that’s all in Japanese and has pictures of Ramen but you can’t see really what type of meat. Being tourists, but eager to YOLO and not look foolish – we all select whatever R is ordering because he knows his food-stuff. We leave the door and wait until 3 seats become free and our order gets made fresh.

Queuing is a big deal in Japan, a physical exercise of the principles of discipline and etiquette that are drilled into every schoolchild and reinforced for every adult.

When, at last, we are waved over to a pair of seats, we watch these amazing chefs – ramen masters – prepare our dishes and they ask if we want a bib. I’m the only one who obliges but. I’m glad for it as we are all bent hungrily over our bowls, slurping the soup everywhere. Like a child & their favourite dish. Every part of me feels warmed up, and extra alive – electrified. I put my hands gently around and over the bowl. Feel the warmth and heat from the ramen. As we slurp down delicious food, we are semi-eavesdropping on the still-waiting people pressed into the narrow space behind us. “This guy is supposed to be the real deal,” an American man says to his wife.
If there’s one thing that you learn about the Japanese as a people is that they are incredibly dedicated, humble, serious, and deeply respectful, and honour driven. While it may seem like “just a noodle shop”, there’s an unspoken code of conduct that every local knows but for us as foreigners may not be as intuitive or obvious.
Consider this, most of these “rules” show that the culture is deeply rooted in the idea that as a customer, it is an honour to be able to eat the food a ramen master since we’re not able to make it ourselves and therefore respect is part of the tribute that you pay. This is craft that most chefs spend a lifetime to perfect and usually without any thought of seeking fame or fortune.
Take a second to let that sink in. This is very different from other cultures right?
I’m not a super plan-ahead kind of traveler, but Tokyo is a plan-ahead kind of city. So if you don’t book ahead, you have to queue up for hours before.
People line up, without apparent impatience, not only at ramen restaurants and store cash registers, but to board subway trains, nab a taxi at a stand, and enter elevators. After the 2011 Tōhoku earthquake—an event so tectonically powerful that it shifted the entire main island of Japan eight feet eastward and spat up a towering tsunami that ravaged the country’s northeast—the world watched in awe as millions of affected Japanese refrained almost entirely from looting, and instead waited in calm, orderly lines to receive supplies, sometimes for 12 hours or more. Next to that, how can my aversion to a queue mean anything at all?
One night R, H and I walked miles from Shibuya through it’s cool neighbourhood Shimokitazawa – it’s style is more hip and grungy than the polished global cool of Shibuya and it’s super quirky cutisy vibes of Haraujuku.
We walked up purple neon hills, seeing the city sky line happen below us, alongside train tracks and through dark tunnels. As always, Tokyo is always eerily quite, but it’s safe. We walked past Japanese baseball stores, off the beaten track pizza places, cool bars, record stores, and more weird shops. We walked until we got to a hood called Ebisu. Where I think had the best burger – and certainly the most delicious Japanese fried chicken.
We walked across all of central Tokyo neighbourhoods. I achieved my goal of seeing the place – with my own eyes.
📷

But it took us time and Tokyo makes you a person who waits.

In the dim light of sunrise, we get up super early – an hour before to get train tickets for Mount Fuji. The time we wanted was already sold out.
We lined up for all kinds of foods and drinks and much more in between.

At the end of all those waits was, invariably, magnificence: The most jewel-like sashimi. The lightest pork cutlets. The richest, deepest, most exquisite ramen broth I’ve ever had.

There’s a phrase in Japanese for places like this⎯gyouretsu no dekiru mise: “restaurants that have very long lines.” The lines are often self-fulfilling prophecies: The wait isn’t part of the cost, as I’d always considered it; to a Japanese person, it’s part of the value. When presented with two vendors selling effectively identical products, the Japanese choose whichever one has the longer line in front of it. Making it through a long line is a praiseworthy feat of endurance, and long queues for one thing or another are always in the news.
As I committed myself ever more deeply to my new practice of patience, I wish I was shooting on film. I was missing my 40-year-old camera , which has no LCD screen with instant preview—instead I had opted to try and do moving film this time. Except it drained my battery and I had forgotten my plug adaptor. So Just like 35mm, each frame became precious, which means you need to make it worth it. You need to wait for the shot.
That’s what I was doing when the strangest, most wondrous, most ineffably Tokyo part of my time there happened. I was sitting on the stone parapet of a bridge over a canal in Nakameguro, a crushingly lovely neighborhood on Tokyo’s southwest side, waiting for the sunset colours to hit through. It was almost surreally pink.
I would be leaving Tokyo the next day, and I was on my last charged battery.
Tokyo is a magical place. I knew this going in, as I’d been before and was now hooked on it, looking for my next high. Every great city is magical, a unique alchemy of climate and culture, of the past and the future. But in Tokyo I found a magic of extremes. It’s a fast, crowded, chaotic place, surging and staccato—until it’s not. You’ll turn a corner onto a side street, or the minute hand on your watch will tick over the hour, and suddenly all that urgent density falls away. The city is a pattern of movement and stillness, sounds and silences.
What I found, as I let myself relax into being a person who waits, is that even if you’re standing near roaring traffic—or in a subway station during the crush of rush hour, or in the riot of a department store—inside the act of waiting, there’s a form of quiet. As my days in Tokyo passed by, I felt myself undergo an almost physical change: In the scurrying chaos of a dense megacity, my restlessness retreated, my breath slowed. I could feel something else emerging inside me, a blanket unrolling over a rumpled bed, a calmness that was neither contentment nor boredom.

Patience was its own emotion.

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.

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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

 

 

Happy SMIZZmas: my holiday message to you

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It’s the annual Smizz Christmas card!! I couldn’t decide which one to share, so I’m sharing them as a collection.

As we celebrate the holidays, and enter into a new year – let’s remind ourselves that love is trust, empathy, humanity, mutual aid, and care. A society built on such love is a strong society—probably the strongest of all possible societies.

I drew Doncaster and used it as my christmas card this year to raise some money for the floods. I was moved by the usual hardships my immediate community have had to endure – from effects of climate change & things beyond this – in particular, Tory cuts. BUT I saw my community come together. People opened up their homes for others, people came together and did art auctions – dedicating their time and work and labour. Volunteers ran emergency shelters & food for all. Members across Doncaster Council, Ed Miliband, Red Cross & beyond worked tirelessly and around the clock making sure people & their homes were ok. And that the rest of us could try & get back to normality too – like roads being cleared from flood water and beyond. So I also ran 10k & sold some prints of these drawings (minus the snow added) – you can still get one! (A4 & A3)

For the rest of the season, I will be donating to Crisis to help fund accommodation for people who are homeless this winter season. Did you know that in Doncaster we have the highest rate of homelessness in the whole of Yorkshire? (This is because of Tory cuts & changes to benefit systems & them cutting all local councils money by around 40% before councils have to sell local assets such as football pitches to get some more funding)

I am also donating to Open Arms, which is a non-governmental organization whose save all the people who are mighty desperate to try & reach Europe by fleeing horrible conditions of war, persecution or poverty.

We (the people in the UK) often fetishise the means of making people’s lives good and fulfilling, while ignoring the fundamental entitlement to those good and fulfilling lives. Like, we talk about train fares and renationalisation, not how amazing it would be to travel cheaply and efficiently.

We talk mostly about what people should settle for, not what they have every right to expect. One reason the UK has drifted heavily into inequality is cuz we have accepted the idea that having a decent life is provisional. And it truly is not. And this is something i am focusing on this holiday season. Making people feel seen and heard.

As y’all know, I am a bit extra when it comes to the festive season. And it stems from the winter of 2012, when I was really, really sick.

All of the money I earnt from my job at waterstones that festive season, in between hospital appointments, literally went on buying people gifts – like I wanted that Christmas to *really* count because I wasn’t sure if I was going to have many more. These were literally my thoughts.

It was when I realized that I took a lot of things in my life for granted, and getting to enjoy and be with friends and family over the holiday periods was one of them. I felt a bit ashamed of this taking and not giving that I had done so much in my life, and not acknowledging the things in my life to be grateful for. After all, we were extremely lucky considering.

In this new light, I reverted back to my younger Christmas excitement. Keen to make that Christmas an awesome one – and i continue this legacy on. i NEVER want to take any of my privledges — this life for granted. And I don’t want to witness the suffering – a lot which is unnecessary due to a lot of gov policy & culturally – without trying to help.

I love how the narratives surrounding christmas – in our movies & shows & music – are about second chances, redemption, hope, a time to make up for a time you wasn’t very nice. And it’s the reason why I get so excited for Christmas! It’s a time where people try to be better versions of themselves – even if it’s just for the holidays – and they try to right their wrongs, and they think of others more than we usually do normally. And suddenly we make more effort to go out together, and all of these things added together really makes a dull season do-able. It brightens up a bad year or makes the year ahead seem less daunting.

And just like watching these endless xmas movies that my mom and I do every year now, it’s not ever about the gifts at all, but about spending time or getting in touch with those who matter. About sharing if you have enough.

The false scarcity is this: we believe that shutting out others, keeping them out of our orbit, our country, our competitive space—that this somehow makes things more easier for us.

But today, value isn’t created by filling a slot, it’s created by connection. By the combinations created by people. By the magic that comes from diversity of opinion, background and motivation. Connection leads to ideas, to solutions, to breakthroughs.

The false scarcity stated as, “I don’t have enough, you can’t have any,” is more truthfully, “together, we can create something better.”

And going forwards in setting the tone to my next decade is just that. To help, share, collaborate and support. To be compassionate and empathetic. To taking chances, and allowing second chances. Believing in our potential – not what people *think* we are capable of. I will do whatever it takes.

I just like to take this moment to say thank you to everyone in my life who have gotten me here too (from everything). I love y’all! Keep being awesome!

Happy SMIZZmas friends, whatever holiday you celebrate – and where ever you are. You’ve made this year incredible and I am moved by all of your generosity of kindness & spirit & support.

Lots of love, your friend – SMIZZ x

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3,500 miles, 14 states, 2 provinces, lessons learnt: We are not built to do big things alone, we are built to do them together

Today’s been my last full day in NYC, and in America. And I’m a bit sad about it.

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This nearly month trip has been a blast and an inspiration. It’s been a frank reminder that our time is too valuable to let a moment go to waste. We need steal as much life as we can out of each day. And I certainly feel like we have done this every single day for 28 days.

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This is mainly due to my ride-or-die-hommie – Colleen – the driver, who drove over 3,5000 miles around north America (Thanks so much Colleen!). Think driving miss daisy meets velema and louise. we visited 14 USA states and 2 provinces in Canada! I visited 6 whole new places/cities – making my knowledge of certain states that I had already ticked off before – even better! With Pittsburg being one of my favourite new cities to have visited. Must be that steel connection. I love understated, post industrial, arty cities *cough*-sheffield-*cough*

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We drove through the most glorious sunsets, that hung around for an hour in all their pinky, orange and purple gloriness. In the end it was like we were actually chasing the sunsets. The more south and west we went, the longer they hung around, felt like you could touch them and looked like paintings in photos.

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We hardly arrived anywhere on time between each destination, (thanks google maps when we were planning for the lies!) but it just goes to show that it’s the journey that matters, and it was never about the destination anyways (especially given that our destination would be back where we had started). In the wrong turns and google suggested adventures, we discovered uncharted areas, and ghost towns of rich-pasts, farm lands, mountains, kangaroo, gems, moon-views, world wonders, the brightest stars and the clearest skies! endless waffle houses and many a gas-station toilet.

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We saw dinosaurs, ate at 120 year old functioning ice-cream parlours, farms of various sizes including the massive production of milk for the North of the USA. We chased waterfalls, and slept in places that felt like we could be in a horror movie — or places that only a protagonist would be staying in to run away from something in their past. (this was emily’s house BTW – deep in a rainforest in Georgia — she said we wouldn’t find it – and boy-was she right!)

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We got some incredible emily warning ceramics, and colleen booked an AirBnB that looked like it was decorated in 1920’s (& i swear down it could have been haunted, i had to sleep with the light on- C still thinks i’m being dramatic about it- but those who saw my insta-story will know the truth).

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I learnt that Colleen sleep walks and talks (don’t worry, she mostly did this in motels/hotels). We nearly picked up a hitchhiker (he invited himself along and we had to politely decline saying the car was too full of pottery for him to have a seat & we were heading to dinasour world next) He quickly disappeared once he thought that *we* were the weirdos. And I also learnt that Colleen is very opinionated about things including road-side eateries. I want her to start a podcast or youtube channel where people just give her a subject and she’ll rift about how scandal-less or waste of time/money it is, or how amazing it is.

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I learn about a dude called Mr Rodgers and how to be kind to ourselves and others through his teachings (& colleen’s pure love for him). and all things from Pittsburgh.

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My french is still LA-TERRIBLE, c’est very bad. (the only time i sound proper yorkshire is when i speak another language). I was constipated for 3/4 of the whole time here (HA). And i ripped my stitches out of my mouth by accident eating SI Broccli! HA!

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Time Zones confused us often. Did you know Tennessee & Kentucky & Chicago is central zone but parts of Indiana and Ohio is not?! very confusing. Tax across the USA is wild. Chicago was the most expensive. We’ve tried lots of foods, from 10am ice-cream in Columbus, Ohio, to mexican breakfasts in Chicago, to Wah Wah gas station food, the biggest slices of pizza in philly (& the worst greek salad haha), to sweet potato pancakes in the south, chicken & waffles, pirogies of all types, hot dogs, my fav tacos and “water and leaf” soups, oatmeal shakes, piles and piles of freshly prepared dumplings, my fav Chinese- PHU-GEES in NH and beyond. I keep ordering far too much food and don’t learn.

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My Sandy Island adventures got me chasing sunrises, i drank too much and kept Lea up chatting absolute bollocks. It made me fully miss sandy summers. I got to see my crew from over the years including Dave B, and Kate, and Julia. Vanda and I reminisced about our Sydney adventures. and Dani and the crew and I went Northern Lights hunting! It feels so weird and good to have a base there. A place that feels like a home. Like a good Smizz Horcrux. I feel like bits of my soul is in NYC and sandy Island. Who knew New Hampshire would ever be a smizz place?

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I’ve spent a good month being glad for life, surrounded by people who I love, doing what I love, & meeting more new super awesome people. I’ve been shown many true and generous acts of kindness this year – here in the USA and back at home. And I’m completely humbled and for ever grateful for these. Thanks just doesn’t seem to come even close to how i want to say Thank you! to EVERYONE!

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one morning this summer before my trip here – with my mouth in stitches, and appointment sheets for the next abdominal surgery, I burst into tears over breakfast, convinced that this illness had drained me of my creative & living/Smizz abilities. Even in that dark moment, though, I knew that my co-workers & friends wouldn’t let me fail. And it isn’t just picking up the baton when I drop it; they’ve (you’ve) motivated and encouraged me through periods of lucidity to art/live the best I could. I’m so damn lucky.

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I feel that I have a little more understanding of what it means to fall over and feel that you have to get up, no matter what you have to leave behind in the process. This is an easy realization to come to because I’m pretty lucky that I have you -all- the amazing people in my life, who have supported me & helped me to live. Whatever i’ve lost, you make it feel like i’m nearly whole. All I have is that you should appreciate what you’ve got.

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I tend to do these trips when I’m sort of running away from what’s been happening to me. It hurts. But I’ve thought long & hard about what I want out of life. And i want to be here for at least another 5 years.

Today I got to see Alex 1 last time, and the way he talks about leadership & connecting always inspires me and i feel it in the pitt of my stomach. (i can’t wait for his future book). As he says, doctors check for pulses but he checks his people. And that’s what i love about him, and something i’m trying to aim for too. My USA trips are always inspiring me to be better, to commit to my work, to give back to my community. I have some time, and if I use it well. It will be more than enough.

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through all this stuff, I feel like I’ve grown up a second time. I’m broken; But I am alive. I’m coming home to  fix some more gnarly health stuff, but i’m re-charged to finish my PHD, start my new work contracts using arts based research methods in public health and doing research into social detriments and getting rid of these health inequalities as much as we can through ensuring access is made for the people who need these services. and restructing injustice things within policy and beyond. I’m looking forward to really starting to lay the bones down for “REAL “- a business adventure with Helen doing social-justice through creative practice. and lots of stuff in between.

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i’m constantly looking forward to sunsets and bike rides and tacos and getting dirt on my boots and feeling grass between my toes and feeling the calm breeze sweep my face as i drive with the windows down. these are the small, forgettable pieces of life that i think contain all the magic, all the billion little tiny disco ball reflections and retractions of the love and light in this world.

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This life is teaching me that there are golden moments, and the darkness cannot touch them. I’m learning the art of discovering those moments, the ones hiding in hard moments and challenging days. but man.. is it worth it.

Wish me luck! and see y’all later!

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.

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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.

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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

 

 

 

Shame, Gratitude, (health) Care & Resilience: Working in Art & in Research

Shame. It’s a shameful thing.  To feel ashamed. It makes you feels weak. It feels like you’re kind of worthless. The other day, my GP shamed me. He told me that I just “need to suck it up & live with it”. (it being bad-ass headaches/migraines/face/shoulder pain) I’m not sure he meant to, but he did. I wasn’t even there for that. He tried to quickly move on – but it hung in the air & it is now burnt into my mind ever since. I keep replaying the moment inside my head of all the things I *wished* I had said in response to him. To call him out. But I stumbled over my words and I itched my head as I usually do when I feel socially inept and at a loss of words as all of the emotion came over me at once.

This moment, which I had gone for antibiotics for a chest infection (which i got!),  all came down to him reading some clinic notes that the physio had written. She had said that I take (over the counter) codeine about twice a month  for a 5-year chronic headache & INTENSE neck/face pain, but only when its pain scale 8+ & it’s grinding me down. And it’s true.   The neurologist prescribed me stuff for it 3 years ago – but the GP refused to keep on prescribing it. we tailored the drugs off – and now I just live in pain. I get it. I understand why he doesn’t want me on these drugs. It’s chronic pain, it’s probs a bit psychosomatic – but i do have shit wrong with me that would actually give me chronic headaches like hypercalcemia that gets so high sometimes I have to be hospitalized.  And also like, migraines are a real thing! But he doesn’t see that. And again, I do  it get the “no drugs thing”. That’s why I have adapted my own coping systems. I know stress makes it worse, Physio helps my neck & shoulder & gives me really good relief for a decent amount of time, and I know I need to sleep-in at weekends to give my body *Something* to building itself back up. I know the GP won’t give me shit for it – so I take the odd over the counter pain relief? So what!?  If he wants control over the stuff I am taking – then he should offer the support. But he doesn’t – so, I guess that’s structural iatrogenesis for you.

I have to take the pain relief when the pain grinds me down so much that I feel COMPLETELY worthless – like the pain makes all my left side of face feel numb and sometimes I can’t actually get language out. It’s embarrassing. My job is about communication – and sometimes i just can’t communicate properly with people cuz the headache/face numbness is so bad i loose my ability to grasp the correct word – or know how to spell it? It’s a weird sensation. It’s like having the worlds slowest seizure. But it goes on FOR DAYS. WEEKS. Even months if it’s SUPER bad like it was back in the radiotherapy training days.  It literally makes me feel like I want to kill myself – because anything is better than not feeling like you’re alive. I joke about this with friends at work. They laugh but pull me up on it. “You’re not serious though, are you?” they say. I just laugh and & say “i don’t know” because honestly on those days, i just – don’t know.  We get back to typing on our laptops and pretend we’ve not really exchanged this odd truth because it doesn’t sit well with who i am.  When the pain is manageable – i’m like the chillest, generally happiest person you’ve met that day.

The GP – a dude who I really respect & admire – made me feel like *proper* shit by shaming me like that (again esp when I didn’t bring it up!). I carry the shame around with me all the time. It weighs me down, and the dirty secret of mine.  I don’t need to hear to suck it up from someone who is supposed to at least be pretending to help.  So I was like, what’s even the point, right?  And It’s not the 1st time he’s shamed me. I can’t blame him directly tho. Healthcare is historically built upon shaming women (Especially) .

I’ve been making my medical shames into comics (this 1 isn’t finished yet). Maybe one day, i’ll give them to my GP.

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So what’s this shame gotta do with everything else? Well, this is the thing. I know that shame is the opposite of art.

When you live inside of your shame, everything you see is inadequate and embarrassing. The pain you can’t seem to get rid of.  A lifetime of traveling and having adventures and not being tethered to long-term commitments looks empty and pathetic and foolish, through the lens of shame. You haven’t found a partner. Your face is aging. Your body will only grow weaker. Your mind is less elastic. Your time is running out. Shame turns every emotion into the manifestation of some personality flaw, every casual choice into a giant mistake, every small blunder into a moral failure. Shame means that you’re damned and you’ve accomplished nothing and it’s all downhill from here.

Working in art and academia/research kind of makes it super easy to fall into shame. The way these worlds work – defaultly – can make you feel pretty inadequate at times. I mean, anyone who has received the raft of reviewer #2 will know what I mean.

Shame creates these imaginary worlds inside our heads. This haunted house that I have created is forged from my shame. No one else can see it, I keep trying to describe it to them. I find ways to say, “You don’t want any part of this mess. I’m mediocre, stupid/boring, and poor. Do yourself a favour and leave me behind.” Sometimes I think it’s because I want to be left behind, though. That way, no one bears witness to what I’ve become.

I’ve gotten super lucky recently though when it has come to work, somehow. I’ve been blessed with an incredible opportunity to do a commission for Yorkshire Visual Arts Network (YVAN) – on creating a work based on snapshots of working in Yorkshire and Humberside as an artist.   And I decided I’d look at this iffy word Resilience.  It absolutely does my head-in, does that word.  It’s a new buzzword. And it gets banged around in scenarios where people are in really stressful situations: an overstretched NHS, an underfunded school, understaffed university, a over-stretched and increasing demand public sector. The reasons why people are stressed & burnt out & things are taking longer *isn’t* the underfunding – no – people just need to be *more* resilent. Here this is the placing the structural injustices onto individuals – and it turn it shames them too.

The North, traditionally and currently, gets less funding than the south. But – it’s cool because WE ARE RESILIENT.

Over the past few weeks I have been digging down deep across various areas: Sheffield, Doncaster – soon Hull and Withernsea. A bit of Huddersfield. I’ve been taking documentation, talking to people. About labour, about art, about making, about worth/value/time.

But I am left more inspired than I first thought I would be.  Every single conversation has ended up about being and providing some sort of care. I am refreshed. This wasn’t what I was expecting to find. I had chosen these specific people because I knew they were doing something special, and was responding to these structures that build shame around us all. They are responding with a resilence built around care.

Over the past few decades the individual, the self, has been at the center. But I’m finding people who are leading us toward a culture that puts relationships at the center. They ask us to measure our lives by the quality of our attachments, to see that life is a qualitative endeavor, not a quantitative one. They ask us to see others at their full depths, and not just as a stereotype, and to have the courage to lead with vulnerability. These  people are leading us into a new culture. Culture change happens when a small group of people find a better way to live and the rest of us should copy them.

I am excited to share this new body of work (still in the process of being made) with you – but the website will be shared with y’all soon.

All of this has made me see that we all need to discard some of this shame that we’re carrying around all the time. But even if we can’t cast off all our shame that quickly, through the lens of art, shame can become valuable.

When you’re curious about your shame instead of afraid of it, you can see the true texture of the day and the richness of the moment, with all of its flaws. You can run your hands along your own self-defeating edges until you get a splinter, and you can pull the splinter out and stare at it and consider it. When you face your shame with an open heart, you’re on a path to art, on a path to finding joy and misery and fear and hope in the folds of your day.

Instead of thinking what needs fixing? we need to be here instead. We can build a new kind of existence, one that feels small and flawed and honest, but each day we can accumulate a kind of treasure that doesn’t disappear.  A reminder that you are alive. And you’re worthy and valued and seen. Chronic pain, citations, published journal articles, bad reviews and all.

Where wonder reigns and hope exists

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Where wonder reigns and hope exists…

Every day I woke up on the train with a desire to feel the Sun. Instead, the day offered gray sky with hints of a snowstorm. The peaks of mountains were hidden, the distance made blurry by snow blowing hard outside but I felt irresistibly drawn to its other glories: the purity of the wind, the promise of imminent thunder, the morning whisper of birds. Fields of Canadian Goose. I never knew why the Canadian goose was a thing, now I know that there’s 1000s out there. Flying together in frigid weather.

As we made our way through the long curvy rail-roads of the North of Ontario into the Prairies of Manitoba and Saskatchewan, the scenery reminded me of Alaska as seen on movies like Into The Wild (spoiler, Alaska is one of the 7 states that I’m missing off my 50 visited states list). Eminent mountains, frozen lakes, endless fields and many sightings of wild animals. Out here, I didn’t take many photos. I was content to simply be in the presence of this majestic landscape, treating those moments with the weightiness and value they deserve.

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In every sight, wonder. In every step, curiosity. In every feeling, awe.

Imagine a scene — you’re standing next to thousands of migrating birds in a snowstorm with endless fields as a backdrop. Swans flutter in the distance like rising snowflakes. You feel part of something big, something that you’ve seen only in National Geographic.

What would you do if you find yourself in a moment like that? It takes time to sink in. We need to listen to what these moments are telling us. Standing in the snowstorm, I experienced nature’s intense power, while at the same time, I am reminded of its sublime beauty.

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It made me think about hope, about what hope is and what it is not.

Over the past few years, chronic illness/pain has grinded  me down just enough to feel on the true brink of hopelessness, a good few times. I never really understood hopelessness, until I was there. Where you’d take being dead for being alive, at any moment, because being alive like that doesn’t even feel like being alive. It’s worse than being alive because you’re suffering.  suffering in ways that are difficult to articulate.  It’s like being stuck in between being alive and dead.  A place of purgatory. But the thing about purgatory is that whilst you feel an emptiness. You don’t realize what a dark place you’re in until you get out and you can see again. Change happens. But it can happen literally overnight. Like it did for me. Even though we’re taught change usually comes over time.

Today the train ran 5.5 hours late. I’m not sure how, but I think it’s something to do with freight trains. This meant that we had a knock on effect on how little time we had in other stops. We had a quick stop with surprise wifi in Edmonton. It was just enough time and wifi to quickly post photos i had accumulated on instagram, and a brief update for Facebook and Twitter so my mom knew I was still alive.

As I write on Facebook, a FB memory appears that stops me in my tracks. It really brings it all back. A few years ago today, I was leaving JFK airport after a YOLO road trip. It was the end of summer after gaining a life-changing diagnosis, which i had spent mostly running away from. I still remember this moment with crystal clear precision, what I was wearing, the smells, the reactions. I can play back most of that summer memories like as if on tape. I left the USA thinking I might not ever make it back. I cried. I felt sorry for myself. I didn’t believe it was true.

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But friends banded together across Sandy Island, then the country… and then across the globe! sometimes I was throwing up too much or too weak to talk. But we kept going. Friends donated time, money, connections. Strangers sent mail, hundreds of photos. All in the hope to save my life or at least make me more comfortable and show support.

I told myself that if I ever get through this, that stuff would be different. There was still so much I still needed to see, so much time wasted, so much to do such as i wanna see my friends kids grow-up, and other friends grow in their confidence and careers and homes. I created a bucket list to help.

I wish I could tell you that the 5 years since have been easier. They haven’t. Even just under 3 weeks ago I was in the Emergency Room with suspected clots. Needles, needles, needles, so many needles, fevers, infections, a never-ending-headache, severe mucositis, so-much-pain, anti-nausea drugs that results in weeks of lost memories, teeth issues, corneal damage, a slate of other issues a little too graphic to write about, crazy painful out-of-nowhere leg cramps…

…all bumps along the road. But these past 5+ years have been really good to me (outside of the health stuff).

I do feel more and more slowly ‘normal’ with every year that passes, despite wanting it to come quicker, and gaining newer or older issues along the way, some weeks are really truly crippling bad – but the good out-weights the bad ones now. I’m not sure if I’ll ever get back to my old self. But maybe that’s just as well?

Because here’s the thing,  as Mark Brown said in his lecture on hope: hope cannot be transferred like a credit card balance. The hope that we feel for someone cannot substitute for the despair and grief and anger and sadness that they feel for themselves. (I learnt this the hard way. ) So, to make hope happen we must first understand what it is and secondly understand why it might be absent. To understand its absence we must understand what depletes it, what stunts it, what pours salt upon its roots and what blights it when and if it ever flowers.”

I never would have ever believed that people would have come together for me in the way that they did in my times of need.

I realise that sometimes we need these long quiet intervals when we can drift ourselves away a little bit from the current. To gain some perspective. To see how far we’ve come, because sometimes when you’re in the dark, it’s hard to see how strong the current has been. Plus it’s always the best feeling in the world is coming back.

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This morning as I sat looking up at the sky in the glass carriage, I saw uncountable stars. The wind in the valley murmurs at the approach of the sun and I find myself fixed on the single small spark of Venus as the stars silently surrender to the light. The first light of day finds my eye and we are connected.

Today, standing here with the mountains, the first light suddenly feels like the. first. light. and I breathe it in with both soul and senses. Here we can remake the world by understanding the world in all its messy, horrific, amazing glory.

A couple of years ago I was on a plane from NYC to the UK because I was dying.

Today I’m on day 3 of 4, on a train crossing the Canadian wilderness, a lil bit worse for wear (i need a shower pretty bad and i’m still harbouring all of my health issues) but I feel more alive than I have in a very long time.

( I Wrote this 3 days ago,I’m now in Seattle, WA – USA!)

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