A Fortunate Kid: a clerk of records for the people

One of my favourite books is John Berger’s A Fortunate Man: The Story of a Country Doctor. In my mind, it is perhaps the 2nd best of John Berger books and yet most of my (art or healthcare) friends have never read it.

To me it is a masterpiece of witness: a moving meditation on humanity, society and the value of healing.  The subject of the book, Dr John Sassall, emerges as an individual deeply committed to inner reflection as well as to his vocation as a physician.

I’m not even a month into being a councillor, my first time, but there’s lots to learn. People keep asking me what it’s like and if I like it?

I’ve been thinking about what it’s like; it’s both strange and really familiar. It seems to be all the roles I’ve ever had before, but mashed together. A bit like being a (social engaged) artist – meets being a radiotherapist/healthcare professional. (things I already am). It’s all about listening, really truly hearing and seeing people and their lives, and being unjudgemental about it all. And then some of that is coming up with solutions/actions and overseeing ways of delivery to making things better.

It still feels weird being called Cllr Smith. I don’t think i’ve ever had anything with such prestige before. Having spoken to/visited in-person around 15 people so far, more including those affected by flooding, I realize that it feels like kind of an old school role. Most people invite you into their homes, give you endless cups of tea, apologise profusely about their house when it’s fine and clean. You see where they live and how they live. You don’t just find out what’s bothering them, but a life story always emerges. Clues in their environment helps to tell their story too. Most people don’t want to contact you but you’re the person they come to because they’ve either exhausted all options or have no idea where else to go.

It *feels* like what i remember my very early years living here in my community. in the late 90’s, early ’00s. In a crisis, people all come out together. They keep everyone effected updated, and when you visit – they all come outside into their gardens. Chatting over garden flower beds and washing lines.

When explaining it to friends I say, “have you read John Berger’s ‘Fortunate man’? because it’s a bit like that!” They say no of course, ha!

A Fortunate Man is an homage not just to the doctor but to a way of practising medicine that is disappearing. Dr Sassall has made a Faustian pact: he is rewarded with endless opportunities for experiencing the possibilities inherent in human lives, but at the cost of being subject to immense and, at times, unbearable pressures.

Now, I’m not writing this about the inherent, unbearable pressures side of that book, but about the community care part. That primary care physician running around the community might be dying out due to the ever changing demands of healthcare & complex disease profiles now and processes. But the councillor role feels like it’s still the same when it comes to the people.

The book opens with a series of “case studies”, though that term is a bit too clinical and doesn’t reflect the emotional subtlety of Berger’s word. They are glimpses of the situations Dr. Sassall responds to every day.

The thing it reminds me most of the councillor role is how these “case studies” also show how powerful an influence the landscape exerts on the community and its stories. Berger writes in the opening pages: “Sometimes a landscape seems to be less a setting for the life of its inhabitants than a curtain behind which their struggles, achievements and accidents take place.” Within that landscape the community looks to Dr. Sassall as a “clerk of records”; the figure to whom they tell their stories: “He keeps the records so that, from time to time, they can consult them themselves.”

Berger and Mohr follow Dr. Sassal through these parallel landscapes – the physical landscape of rural England and the metaphorical one of his patients’ lives.

Now, I’m no doctor. And the only thing I’ve contributed/completed so far is helping to move slippy, thick slurry off paths at 11 o’clock at night and got someone a new green bin replaced… for free! I know, exciting stuff. But, this landscape here – the stories of peoples lives, the complexities, how it all comes together. It’s so powerful, and poignant. It’s basically old school primary care for the civic, rather than the body. Though, if you get it right – it also eventually helps the body too.

Towards the end of the book, Berger tries to make an assessment of Sassall’s contribution to society, but finds that he cannot. A society that doesn’t know how to value the lives of its people can’t adequately account for the value of easing their suffering.  That’s where we are at now. That’s what we have to try and ease and figure out how to make things better, in spite of forever cut budgets and declining living standards + life-expectancy and increase of poverty and all the complex-knock-on-effect stuff that comes with it.

It’s about getting to know people/residents well; caring for them in their own homes and communities; managing uncertainty; gauging when and what to push for. 

I get classed as a politician now. But I’m not quite sure a councillor *is* a politician? By being classed as that, I am now synonymous with a lot of negative stuff: corruption, greed, laziness, not a real person. This does hurt my feels a bit. In our defence I’d argue that a good local councillor & team can be a restorative, engaging and deeply affirming for both residents and councillor. I don’t think people really know what your councillor does and sees, and hopefully this kind of reflective writing widens the scope a bit. I think the UK councillor role is an unique, and valuable one.

It’s a forever dance with the relation between the visible and the invisible between both my residents stories, and our roles as councillors. The (councillor) eye becomes the depositary and source of clarity; it has the power to bring a truth to light.

Just like in my life where I am indeed, many things at once: artist, lecturer, healthcare professional, researcher, patient. A councillor is also many things at once: counselling of listening, resident, social observation, photography, biography, philosophy, policy. It is, ofc, always a work in progress.

What’s it like being a councillor then? Just like the doctor in Fortunate Man, I am now a clerk of records for the people that I live among. And I am grateful for it.

Re-Building Compassionate, Playful and Powerful Communities

8 days ago, i was elected as a local (Labour Party) councillor. 8 days on, I still can’t quite believe that the electorate has lent me their trust and votes. That’s all it is though, a lending. I need to earn it over the next 4 years. I hope, with all my heart, that I will do this.

Any of you following my blogposts over the years will note that i come with a varied skillset and experience profile. I’m an artist (unusual for a “politician”), i’m a qualified therapeutic radiographer – but now work in cancer research (not on the shop-floor so-to-speak). My work here has helped to enhance the communication & experience of radiotherapy for patients and others alike.

My experiences of what it feels like to be chronically ill and its effects on your life has moved this, making me extremely patient/people centred and passionate about (all kinds of) health & social care policy. I’ve also been working in Public Health for the last 3+ years. And I design new health & social care services/things, made WITH the people who use & work within them, get them commissioned, & change their access & experience of care that way (in a positive way). I get to do this in my multiple roles as an artist/designer freelancer.

Outside of this, I grew up very poor, in the most working class home and neighbourhood, and then I experienced homelessness with my family when I was 15 due to domestic violence. I was elected a Donx Youth Councillor just as I became homeless all those years ago.

So it always hurts my feelings a bit when people say “We [politicians] are all the same, or corrupt” or “Labour isn’t working class anymore.” Because it’s obvious – visually, when you meet me – that i am not the same. I can’t even imagine myself as being corrupt – i’ve spent my life trying to bring injustices to light. and I’m as working class as we come. But I just so happen to have a university education now. That doesn’t change these experiences that have made me, and how I still live, my culture etc. And I am still affected by my working classness in how I have to navigate fields/industries that are laced with class issues and inequalities.

I’m a big believer that our life experiences form who we are and what we can do. Being narrators of our own stories comes with a big power. We can get to decide what’s devastating, what’s not and what we can pick ourselves up from or can’t. But some of that, we still have no control of. Just our actions going forward.

Not everyone is as lucky as me (trust me, luck is a huge factor in here). Despite an illness nearly ruining my life, and the sheer stress and danger of growing up in a not safe household – it made me want to stand up. It made me realize that the everyday status is quo, and we have to actively fight to get beyond status quo. which is energy draining.

It made me see the world, from a very young age, and to see that inequality and unfairness isn’t an accident. IT IS DESIGNED.

The action of social justice has always moved me. For fairness, clarity, care, justice and innovation. And that collaboration is part of that. No decision about me without me!

In my new role as a councillor, i am wanting to build upon what Jon Alexander names as the “Citizen Story” where:

‘the role of government is neither all nor nothing, but in between: to equip and enable us, and to partner with us; to share as much information and power as possible, so that we can work together with government and with one another to create a new normal.

It’s about stepping into the power we already have as citizens.

So many people don’t realize that they have the power.

That’s a clear big 11 year project from the Tories that has drained most of our hope, making us feel like we can’t even dare to dream bigger, that we somehow don’t believe we deserve to have our kids education properly funded, or an NHS that’s fully funded. That unknown ideas might become “wasteful” – even tho we know unknown ideas are the things that always drives us forwards.

i’ve seen the power of my community. I don’t know if they can see it themselves though? So that’s going to be one of the things I will be working on, with them.

When Covid-19 happened in March 2020, Johnson wasn’t going to help stop the spread of the virus. It was the collective action of a nation, of multiple 10000s of communities coming together and demanding through their own actions for the government to announce an official lockdown and therefore having to embed support for those who needed it. We’re led to believe, probably by the media, that we’re becoming more and more individualistic. There are people who are, ofc. But they’re still a minority.

This past year & a half, we have seen that we care about each other deeply. We want to work together. We want to be useful. (and i’m one of those people). let’s harness this.

You start with truth.

There’s no single right answer. Everyone has experienced things differently and had different experiences.

everyone has their own story and everyones story is equally important. I hope I can help to make people feel heard.

Throw in laws, other organizations and money into the mix and it gets so much more tricky. If we try and plan out the most perfect plan, and try and ignore the bits that don’t fit your picture – you will be doomed for it to not work, and not in a good way.

There must always be truth, communication, collaboration, co-ordination and conscious learning.

HYPER-LOCAL. Not centralized.

In the Citizen Story leadership model – the central government should give local government more £££ and autonomy. And the local government with the communities/citizens work together what needs to happen with that.

In spite of Local government getting £120+ million LESS per year across each council (thanks to the Tories), the Donx has been developing the community, compassionate, people & earth focused model. It’s super refreshing. And i am super stoked to be doing this with my community.

A great example of where this has worked is Test & Trace centrally didn’t work, so local authorities had to lobby the government to take charge of it in their own areas. Our council did this and it’s been super successful. Imagine if we did that from March 2020 onward. Using our own knowledge of communities, with communities – the picture would have looked a lot different.

In the Citizen story, though, councils are vital. They are citizen enablers, not service providers. When power and resources are pushed down to the local level, they are much closer to us. Whitehall cannot make the places where we live better. We can (with funding ofc). We cannot know our ministers.

We can know our councillors; we can be councillors. I want you TO KNOW ME. Some of you already know me. This is going to be key. I want more people to know that they can, & should, do this too!

A shift from “Us and Them” To “A Larger Us”

Just take any Boris Johnson story over the last year & it obviously has HUGE them & us vibes. They (he) can do whatever he likes without succumbing to the same rules/laws/morals as us. He isn’t affected by anything he does but would disproportionate negatively affect us if we did it. For example: Breaking lockdown rules during lockdown 1, or CCJ debts where a normal citizen would have been hounded or jailed for.

this sentiment lies heavy, that’s why I am branded with the same brush of politicians “always being the same” – because the current government shows this in the most extreme way, than we have ever seen before!

The Citizen story rejects this separation. We are all of us citizens, and some of us for various amounts of time take on the tasks of politics. It is a spectrum, not a binary distinction. My task is to shred this negative baggage of the binary we have created.

Using my art/design and co-creation/collaborative background –  We will be thinking about how to design/give space for dialogue platforms to enable citizens to contribute to ideas more.

These are already happening. Esp in my local community too. To remember that the word ‘government’ is a verb, something we do together; not a noun, an institution that stands apart. 

Alexander talked about a booked called A Paradise Built In Hell, (2009) about human response to disasters through history, where the American philosopher and activist Rebecca Solnit describes how communities invariably come together, developing new ways not just to survive but to thrive, healing old wounds, and finding joy in the process. She also articulates the root cause of a phenomenon where Government can do more harm than good, which disaster scholars call “elite panic”:

“The elite often believe that if they themselves are not in control, the situation is out of control.”

We are seeing this currently in Police Bills that will take away our right to protest, Citizen Identification Rules in order to vote – stopping over 2 million people’s ability to participate in democratic acts/rights. We’ve never had such an elitest government in such a way for decades and decades. Their discomfort with this situation of citizens becoming more active is ironic, given that this group came to power with the slogan “Take back control”: it seems they meant “give us control”, rather than intending for us actually to get involved

So many of us have already done so much for our communities, but far from seeing this as a burden we cannot wait to set down, we have taken joy and pride in doing so. But we are in control, I believe, and are starting to build the institutions, structures and processes that could lead to a very different future.

The Donx has an incredible new team of people focused, citizen grounded councillors with an amazing compassionate, people & earth focused plan and vision.

Together, I can’t wait for us to work to build it locally, reinventing ways on how we understand these structures and radically keep it all open for us all to be part and active within it.

How? By listening, being there, being an active citizen, building accessibility, dealing with epistemic injustices, investing into people. being creative, playful and having fun whilst doing it.

The arts are a great way to engage, show, raise, do difficult things/topics/issues together. And I can’t wait to give it a go alongside all of my other cllr duties.

***all text images are all from artist Ruth Beale kids club hosted at TACO more info at: https://taco.org.uk/The-Hundred-Club  (its london based – but will like to do something similiar here)

2020: A year meant for listening & learning – but are we doing it?

I’ve spent many years doing this Live Drawing gig. It’s my biggest livelihood maker. I get to draw and learn for most of my living! How cool is that? Alot of people wonder how I can listen and remember and draw – stuff that I might not actually know, hearing the content for the first time – all at the same time! So when the speaker has finished – the drawing is pretty much finished too. It’s live. There’s no space for making post-it-notes and then draw/edit later. That’s not how I do it. Because then that wouldn’t be the real essence of that talk. It would be my memory of the bits I understood the most or stood out. It wouldn’t be the actual talk. That’s not my style. I like to include all the stories and bits in it that a lot of other graphic facilitators miss out. I try to capture not what’s just being said, but the heart and context of it all.

This year, the year of Lockdown, I lost 85% of my livelihood & gigs in a New York minute ( I -luckily – picked up other work elsewhere) as conferences and workshops all stopped. And I am nervous for the future of what that work will look like. But I will adapt, I am sure.

When I was learning this craft of mine; the ability to properly listen became my superpower. Just listening. It gave up space for me to carry on making all these connections, storing it, and drawing — whilst listening to the next new stuff.

It made me realize that a lot of us aren’t ever 100% properly listening (including myself!) When was the last time really listened, without thinking about what you wanted to say next, glancing down at your phone or jumping in to offer your opinion? And when was the last time someone really listened to you? Was so attentive to what you were saying and whose response was so spot on that you felt truly understood… really heard?

We are encouraged to listen to our hearts, our inner voices and our guts, but rarely are we encouraged to listen carefully and purposefully to other people.

The year of zoom/ms teams/skype/jitsi/etc has been a wild one. Social online gatherings with physical lags – conversations staggered, frozen; the worlds most awkward pauses because we can’t see peoples body languages to see if they’re going to say something next. Online and in person, it’s all about defining yourself, shaping the narrative and staying on message.

And yet, listening can be more valuable than speaking. Wars have been fought, fortunes lost, health decreased and friendships & communities wrecked for lack of listening. It is only by listening that we engage, understand, empathize, cooperate and develop as human beings. It is fundamental to any successful relationship — personal, professional and political.

The lack of listening is causing a whole host of issues. A push of misinformation, of people following radically bad groups, of the pandemic of loneliness & mental health issues — and this was before the Covid-19 pandemic… extra not being listened to just exasperated these issues further. as does access to the technology that can exasperate it.

As a healthcare professional, and someone that works in all areas of health & the community, one thing that comes up again and again is experiences of not being listened to. It’s hard to pin-point exactly what makes a good listener – but ask any patient or member of the public about experiences with professionals – medical or otherwise – and they’re likely talk about times when they felt not listened to. the sad truth is that people have more experience being cut off, ignored and misunderstood than heard to their satisfaction.

When I was suffering from never-ending BAD headaches, a sexist neurologist told me it was (in so many words) that it’s mostly young women who suffer from chronic headaches so it’s not serious or a big issue ( was for me, obvs) and that it’s likely from a trauma, but doesn’t have to be a big trauma, just something small like… looked me up and down… and said, “something small like not fitting in.” The dude had properly judged me & thought I wouldn’t pick up on his judgements of words. Of course, in these situations where something is so vitally important – you remember everything. You’re the best listener ever. You pick up on mean bits of language like that, everything else is hightened too – like the sick coloured walls surrounding you, the very garish 60’s furniture. And you remember it. That was 5 years ago.

He told me to go to talking therapy before he’d even do any investigations or prescribe me something. At the time I was exasperated by this, as I was already feeling very much on the edge, after 18 months never ending headache. But you have to play the NHS game. You follow the rules, and TBH I would have done anything to help. If he told me to hang upside down, singing one direction songs for 5 days in a row – I would have done it.

But I was a bit skeptical. I got an appointment a few weeks later. And I spoke to this counsellor dude, who was obviously assessing me and where i’d fit best – into what programme. He asked questions and I spoke. We talked for nearly 2 hours. And at the end of it – he said he didn’t think I needed talking therapy – unlessss I wanted it – but i needed a second opinion from a diff neurologist. He told me he thought that I was incredibly strong with everything I had gone through (this nearly broke me).

It didn’t make my headache go away. But it did make me feel better, generally, in my self — in my soul. And I realized that it was because for the first time – ever? in a long time…. I felt heard and really truly listened too. I can’t actually explain what he did that made him feel like the most exceptional listener – but I think it was in his timing of the questions, his body languages and the words of his questions. The spaces? The time, maybe? I used that service once, & I still tell others to go and use it.

I discovered that listening goes beyond simply hearing what people say. It also involves paying attention to how they say it and what they do while they are saying it, in what context, and how what they say resonates within you.

A lot of listening has to do with how you respond — the degree to which you facilitate the clear expression of another person’s thoughts and, in the process, crystallize your own.

Good listeners ask good questions. I was in the Doncaster Freepress this year, and I’ve since become good friends with the journalist who wrote my piece. And I knew she was an awesome journalist because she knows that anyone can be interesting if you ask the right questions. That is, if you ask truly curious questions that don’t have the hidden agenda of fixing, saving, advising, convincing or correcting. And she does that. interrogation will get you information, but it won’t be credible or reliable.

I believe as a nation, The UK, we are in a grave position because we have a leader and a government cabinet – picked only for their deficiencies – who can’t or refuse to listen. They are making the same mistakes over and over and over again, making problems even worse. There’s no more excuses. Their inability to listening is deafening. We’ve just got one of the worst deals in modern history with our biggest trade partnering block – all under the disguise of Brexit – a scapegoat by a government who has undercut millions of working class and lower middle class people and told them it’s the EU or immigration. NOT choices by a government that does not or simply chooses not to listen or understand.

How you listen can work like a self-fulfilling prophecy: If you’re barely listening to someone because you think that person is boring or not worth your time, you could actually make it so. Moreover, listening to other people makes it more likely other people will listen to you. 

Listening is a skill. And as with any skill, it degrades if you don’t do it enough. It’s something I had to learn to do well for my live-drawing, and something I will worry about not doing as much of it for the future. Some people may have stronger natural ability while others may have to work harder, but each of us can become a better listener with practice. The more people you listen to, the more aspects of humanity you will recognize, and the better your instincts will be. Listening well can help you understand other people’s attitudes and motivations, which is essential in building cooperative and productive relationships, as well as discerning which relationships you’d be better off avoiding. When you experience what good listening is too, you know how to ensure you can try and make other people feel like that too. It’s something I am forever striving to do in all of practices – art, health, teaching, life and beyond.

We are, each of us, the sum of what we attend to in life. The soothing voice of a parent, the sound of the ocean or rain, the guidance of a mentor, the admonishment of a supervisor, the rallying call of a leader and the taunts of a rival ultimately form and shape us. And to listen poorly, selectively or not at all limits your understanding of the world, and can do significant harm like it is doing now.

Let’s start to demand to be really listened to by those in power, or the very least – bin the current government for one that is human, and listened. Let’s start really truly listening. Not hi-jacking, not waiting for our turn to speak. But be present with those around us. 2020 is a lesson in what not listening to people ends up doing.

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!)

Holding space.

This date – the 24th May – in more normal times – seems to be the day of amazing things as Facebook memories reminds me today.

6 years ago I started my proper rehabilitation from the first wave of being super sick and not having any energy outside of going to work & doing the odd social thing. I managed 1.5 miles terrible run with shingles!!! It took weeks to build it up to just over 1 mile.

This year I got to do that half marathon. 2014 me would have been like WHHAAARRRT? NO WAY. NOT POSSIBLE. She’d never have believed it, esp given I was barely running when fully 100% healthy (?) . It also reminds me that – now after nearly 11 weeks of not being able to exercise outside of my house due to shielding and my poorly leg (injury from the half marathon). Now my leg has healed (i think?) & shielding is nearly over (lol, we also think) — it’s time to start back at it, and i think i might be back at those fitness levels of 2014. It’s going to be hard. I’ll have to do it late in the evening to avoid seeing people. but this reminds me that it can be done. And to persevere.

I started selling a print of my drawings of Sheffield 5 years ago today. That raised over £1000 for Doncaster Detection Cancer Care charity. Wild!

I got to see the amazing Andrew Mchanon In the Wilderness at the first-ever gig I went to alone, in Manx – 3 years ago. That was incredible.

And this date seems to be iconic in our PHD studio community. From doing a field trip to stoke on trent – which was so much fun (3 years ago). to celebrating spring/summer together 2 years ago now. It was a glorious day. Bright blue clear skies. A bit of wind that blew across our faces as we sat and drank lemonade with raspberries and mint, or passion fruit juice with a shot of grenadine for sunsets. All i remember is bright colours and laughter as we got to test out Antons cool artwork – Mollie! A cool-street-version of may pole dancing. It was hilarious and incredibly spectacular.

I share all this because I don’t want to keep writing depressing truths of an incompetent government (it’s like a weird compulsion i have to keep sharing it).

But i share this as a reminder that we still have each other, of the things we’ve been so lucky to get to do in the past.

That there are brighter days in the hazy, bad days. There seems to be such strength in the thinking of all the days we spent, orchestrating adventures and how the lights that used to blind us will somehow guide us through these nights. Cars now just parked outside the house, how we’re staring down the roof and the walls. The balcony, the hills, the pain. The years of hope, the months of rain.

When I thought my life was going to end (and honestly, it really felt like this), i felt like I had wasted my time before that. worrying about stuff that didn’t really matter, not paying enough attention to the beauty and immediacy around me. So much i wanted to see, people i needed to thank, things i wanted to change, kids i wanted to see grow up. all these lives i wanted and had to live.

I am so frickin’ glad I did that. That I got to see so many places. Listened more deeply, was a basic bitch and went out of my way to watch and see properly so many incredible sunsets and sunrises. I knew I had to notice it all, create times to bring people together, to seeing things i loved, to try new things i had no idea i liked and bank it all. in photos, in over the top facebook posts, in endless external drives of data, most of all – some how ingrain those memories and feelings in my head. I felt like it would be for a time i wouldn’t be able to physically be able to do it anymore. I knew that I could not waste a minute of my life.

But! i had no idea i would be banking it for something like now.  

What I can say, from experience is that once we’re safely outside of it all (tho that will take years). we’ll be able to see that we (hopefully) will have survived it after all, using each other. and that is so powerful. Holding space.

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.

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