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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If you end up having to be isolated at home

Being sick – chronically – on and off in severity has made it that I too have had my fair share of endless isolation.  Some of it in an attempt to not catch anything from others, most of it because I had NO energy/too much pain to do anything, or to try and leave the house.

Having a day or 2 off from work seems at first a luxury. But when you know that you can’t really leave the house – it does start to feel – FOMO-y — starecrazy — what to do? What are you missing out on? As humans we are naturally supposed to socialize, be a community. Without others we begin to feel lost. Happiness only really exists when shared. That’s why loneliness is such a killer and a huge issue.

It’s probably the best time ever – in history – to be self-isolated.  You can do online shopping, have endless libraries of music, movies, shows, audio books, e-book, journal articles, random youtube videos & tiktoks. You can get your food delivered, do your HIIT work out in your living room, take up gardening if you are lucky enough to have a garden, learn how to draw or play the guitar by following online tutorials. You can finallllly get to the time to read those books that are piling up on the bedside cabinet.  and we can video chat to friends & family, or endless messages to one another if we so wish.

But with this comes great responsibility. Endless news streams on TV can become doom & gloom. Sending people who are already struggling into anxiety.  Many of us – who are on zero hr contracts, or causal contracts, or self employed will be worrying about money if we end up having to be isolated.   Many of us will have loved ones (or are in) a high risk catogery and we will be worrying about them, and the people on the frontline. We can sit down to watch a show – and waste a whole 45 mins deciding what we want to watch because in many ways – there is too much choice. or the illusion of such. sometimes we want to read but our brain feels too fuzzy to concentrate.

So this here is my crib-sheet to maximizing time – coming with good recommendations. a So you can maybe hoepfully be able to cut out some of the anxiety and indecision and begin to enjoy some of this extra time. The extra time gained from not being stuck in traffic, not being on an endless delayed northern rail train home, not being stuck in a meeting that never should have been a meeting.

I hope you’ll enjoy the Smizz fun/hopeful/uplifing/easy to engage with recommendations!

 

TV SHOWS

Parks & Rec – Amazon Prime/ NowTV / Sky –  A CLASSIC: People going out of their way to help each other. It doesn’t get any better than that.

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Sex Education (Netflix) – The second season builds on what made the first series so good. It’s confident, funny and surprisingly deep.

My Left Nut (BBC Three, iPlayer) – About a teenager who realises that he has an enlarged testicle. It morphs into a tender, heartfelt drama about grief and anxiety, and how your family will stick by you through the bad parts as much as the good.

Brooklyn Nine-nine (Netflix, 4OD, SKY) – NINE-NINEEE! you can re-watch, over and over any episode – but you will laugh and you’ll love every single character & the jokes never get old. What can I say, Michael Schur is an incredible empathetic comedy writer.

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The End of the F**king World (All4) – My friend Helen says she loved this show. So I gave it another chance, & realized its perfect for these times.

Midsommer Murders (ITV2, BritBox, ITV Hub) – My mom love to watch this show – not particularly because it’s good – but because it’s kind of ridiculous, which makes it funny ( see Martina mcutching get murdered by cheese in series 18) & it’s a really good game if you’re watching alongside others to figure out who the murder is – and even harder – what is their motive!

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The Bold Type  (amazon prime S1-3)- fans of The Devil Wears Prada-meets-Gossip Girl-meets Ugly Betty – will LOVE this. It’s hard not to love the characters. why do i love this show? its portrayal of the refreshingly supportive friendship of its three protagonists, as well as its frank look at complex contemporary issues like #MeToo, reproductive rights and of course all the drama that goes with being a twenty-something building a career and looking for love in New York City.

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Ugly Betty (S1-4) Amazon Prime – Of course, I can’t miss this off the list. I LOVED this show so much when it first came out in 2008 when things all felt uber hopeful. Betty will make you believe again. I watched this show, and saw my own struggle – how do you enter a highly elitest, competitive, expensive cultural field such as fashion (art) and keep your own values, sense of identity without doing your own heritage and diversity down. What does that elitism do to us culturally? A show so woke before its time – it could have been written yesterday & not nearly 10 years ago – and it’s wild to think these issues have barely been solved since. It’s high energy, bright clothes, lots of melodrama, best written characters and BIG DREAMZ OPTIMISIM DOING THE RIGHT THING energy-vibes are just what you need.

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Instant Hotel (Netflix) – I watched this when I was super sick as just something to fall asleep to. Before I knew it, i had blasted through 2 seasons. I wish I could get to see a 3rd season. Think 4 in a bed, meets changing rooms. IN a hot austrialian climate with people wanting to have the best airBnB basically,

The Great British Bake Off – (4OD, Netflix) – There’s never been such a more pure TV show. A competition but ultimately a group of people who love baking end up being awesome friends! Delicious food, super funny outcomes, great team work, bit of the best of britishness – Raising money for stand up to cancer episodes are sooo good & I think the New Years 2020 Derry Girls episode is the best in history.

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Derry Girls (S1+2 4OD, S1 Netflix) – Another wholesome amazingly written comedy. The specific setting gives Derry Girls its extra layer of complexity, as well as some of its funniest lines. By and large, life in all its unimaginable and bizarre glory goes on. The writing by creator Lisa McGee is top-notch, the show’s searing one-liners and tonally perfect ’90s soundtrack as fantastic as its predominantly female cast. The series maintains a reckless and irreverent tone and is never weighed down by politics or nostalgia. But it will take you back to growing up in the 90’s, early 00. And you’ll love every second of the show but it goes past way too fast.

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HOME – (s1+@ 4OD) – A comedy series written by and starring Rufus Jones deftly gets to the essence of home and family through Syrian asylum-seeker Sami. One of the issues with Brexit, and austerity etc is that we don’t really have touching cultural examples of it. It’s not really on TV or in the movies. But HOME does, and it does it so-so well. It has the potential to turn those Daily Mail readers into opening their homes to refugees.   This show shows the very worst and very best parts of living in the UK. It makes you route for everyone. And it’ll make you laugh and cry.

Please Like Me (Amazon Prime, netflix with a VPN) – Spend enough time around the show and it starts to grow on you in a mainstream 80s BBC sitcom kind of way. It’s a wry, down-to-Earth and often-moving account of how relationships with friends and family evolve as we grow into adulthood. Watch it for the real, difficult, compassionate Josh’s role as a young carer. Start it and stick with it.

Special (Netflix) – i freakin’ love this show. Masterful in 15 minutes bursts – which makes it one of those perfectly lengthed shows to watch before you go to sleep. aside from the show  is vastly significant in terms of what it does for representation in the mainstream culture, provides me, and other disabled and marginalized people, with a much-needed piece of representational belonging. It’s so loving and thoughtful, and ultimately it is not about accepting oneself. It is about showing oneself as you are.

Schitts Creek (Netflix, 4OD) – Maybe the most perfect comedy of our time? Every person in this show are the best.  As the series goes along, it’s less about class difference and more about a place where community welfare flourishes outside traditional systems of power.

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MOVIES

Love, Simon (Sky) 2018- At its heart, this is simply a story about love and tolerance and honesty, and told with a perfect dose of each of those things. You can watch it & it’ll remind you so much of growing up. What really makes this film a feat of queer cinema is how ordinary it is. It’s a love story between two men, but without tragedy and angst, seeming quite radical for how sweet it is. Dope soundtrack.

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I LOST MY BODY (Netflix) 2019 –  A disembodied hand tries to make its way back to its owner while a young man searches for connection after a traumatic event. It mixes brilliantly creative action and horror sequences with tender heartbreak and life-affirming drama. Go watch on Netflix!

THE REPORT (Amazon Prime) 2019- So, yeah, maybe I really love movies about people obsessed with the truth who fight institutions trying to hide it. Burns said the film is about our current “crisis of accountability” and it’s rare to come across a film that’s as involving as it is necessary. One for the times! It’s brilliantly engaging.
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Late Night (Amazon Prime, Sky, NowTV) 2019- Thompson and Kaling don’t even need to be acting here. Like all women, they’ve long had to navigate real-world misogyny. But they also know how to find the humor in it. An important movie that looks at the issues of sexism in comedy (& entertainment industry generally) but with a good laugh.

Booksmart (Amazon Prime) 2019 – An underrated awesome movie. Underrated because it’s about 2 strong girls. It’s more John Hughes than Judd Apatow, and it’s a little more Bridesmaids than Lady Bird. Booksmart is feminist, foul-mouthed and funny, turning the formulaic tropes of bawdy comedies inside out and giving us a couple of teen heroines who feel real and very 2019. It felt new from friends at the centre of the story to the celebration of female intelligence, ambition and loyalty.

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Finding Your Feet (Amazon Prime, Sky, NowTV, Netflix) 2018 –  I accidently watched this on the plane to the USA – when it told me it was a comedy. And it is. But it’ll also make you cry.  Watching it demands little effort. Evict your inner cynic and enjoying it should demand even less. It’s a bit sentimental, but I am *SO* there for it. The bright and funny first half examines issues affecting older people which are often ignored; The second is about making sure you don’t regret how you’ve spent your time.

Chef (Amazon Prime, Netflix) 2014 – an enjoyable and good-natured farce is a rarity in that (as its title tells us) it takes a chef as its central character and treats his profession with something approaching respect. The result is a small, unashamedly feel-good film that makes up for what it lacks in dramatic jeopardy with gentle comedy, heartwarming family scenes, ladles of food porn, and time spent among characters you like.

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Paddington (1&2) (Sky, NowTV & Amazon Prime) (2015 & 2018) – I’m not being ironic or weird or contrarian – but Paddington movies are some of the best movies of the past 10 years. It is simply (Pad 2), without hesitation, was my favourite film of 2018. It’s an eye-popping, laugh-out-loud, clockwork-constructed endorsement of kindness, forgiveness, and good ol’-fashioned human empathy. Or… ursine empathy.

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The Green Book (Amazon Prime, Sky) 2018 –  roast me for this, but I don’t care. A by-the-numbers studio movie and the numbers are great. The interplay between the two leads is a fantastic and familiar dance; every detail is exquisitely rendered.

ROMA (Netflix) 2018 – A bracingly human story set against abrupt, nearly-surrealist acts of God and society. The cataclysms only serve to underscore the fragility of the world and the strength of our personal bonds. Sad I never got to see it on the big screen myself.

 

PODCASTS

Alex Edelmen’s Peer Group – https://www.bbc.co.uk/programmes/b08smc1c – Alex is maybe one of the best comedians of our generation and he’s just getting started. This is such a great comedy podcast that looks at issues surrounding Millenials specifically, he does quite a bit from his current set on his current tour within some of the episodes, so worth a check out for that alone!

The News Quiz – https://www.bbc.co.uk/search?scope=sounds&filter=programmes&q=News%20Quiz&suggid=urn%3Abbc%3Aisite%3Acurated-m-o%3Anews-quiz  – every friday night – i look forward to catching up with comedy and news. takes the edge off. 

No Such Thing As A Fish –  https://www.nosuchthingasafish.com/
Could this be the best Podcast ever? Want some crazy facts to give people randomly but enjoy them in a bask of comedy discussion? This is for you. Plus there’s 300+ episodes to go through.

My dad wrote a porno – https://open.spotify.com/show/6nYCARKKZ5UvaUedL6KEu3 A series in which Jamie Morton reads out chapters from the erotic books his 60 year-old dad has written.

 

MUSIC

WORKIN’ FROM HOME PLAYLIST

Here’s my work from home playlist – it’s collaborative – so you can your own tunes to it. But the only rule is the song has to be your best/fav songs since 1990 onwards.

 

RUNNING PLAYLIST

If you’re going to go for a run. here’s my 10k inspired playlist that’s long enough to run a fast marathon

JAPAN VIBES

studio ghibli soundtrack amazingness to feel sad, happy, and relaxed all at the same time

 

THE RISING GIRLS CLUB

A playlist to help inspire all you females out there. You’re strong and you’ve got this

 

I’ll update this as I go along, but I hope this helps!

Remember- wash those hands often and super well. Stay safe and keep checking on neighbours and those who need extra help. And reach out if you feel everything is getting too much.

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

 

 

 

gifts and choices

In my procrastination of trying to write up my methods section for RF2 (my next PhD barrier) I came across Jeff Bezos’s commencement speech from 2010. (Not super sure how I reached  it in my click-a-thon).

But I found it to be incredibly important.

After my life got shook up when I fell sick, I had to change how I worked, how I lived to move around shitty symptoms that really brought me down. It made me question everything I was, and who I am, and where I was going.  It hit me when I was on my way up in the intermediate art-world, and brought me tumbling back down to the ground, really hard – really unprepared for this new world – injured in so many different ways. Every time I looked at myself and my life, it was like looking at a mirror that had been cracked a bunch of times. I’m still not over it all.

At times, I feel more broken than I ever was, but I feel at different times and in different areas I have gained so much more. One area is in personal growth. Whilst I’m still trying and learning to be a better person (and sometimes failing,) I realized that I WANTED to REALLY be a better person. I had no idea how I was being supported years before I fell sick, and even still to this day, where I felt incredibly stupid for taking it all for granted.

Some days I literally feel like I’m dying, and with this came a fear of what would be my “legacy” (this is such a loaded and over-the-top word). But what do I want to leave behind? What do I want my work to be? We spend so much of our time at work, doing work – of all kinds – that it makes sense that we should try and enjoy and make the world a better place than what we found it in.  This doesn’t have to be a grandios project – we know it often only has to be the smallest thing that can make the greatest of differences. Listening.  Offering to help someone out.  Introducing yourself.  Donating to charity. To giving someone a helping hand up. The list is endless.

Bezos’s speech really resonated with me, and I think some of his words are good markers. Especially when the road is rough, and rocky, and risky and dark.  So I hope these bits I’ve chopped up here – help you.

In 1986, Jeff Bezos graduated from Princeton with a degree in computer science. In 1994, he founded Amazon.com. He was literally selling books from his garage. In 2010, he went back to Princeton to address the graduating class about the difference between gifts and choices — a profound reflection on reconciling being smart with being kind, an illusory choice many “successful” people feel like they have to make.

Cleverness is a gift, kindness is a choice. Gifts are easy — they’re given after all. Choices can be hard. You can seduce yourself with your gifts if you’re not careful, and if you do, it’ll probably be to the detriment of your choices.

Tomorrow, in a very real sense, your life — the life you author from scratch on your own — begins.

How will you use your gifts? What choices will you make?

Will inertia be your guide, or will you follow your passions?

Will you follow dogma, or will you be original?

Will you choose a life of ease, or a life of service and adventure?

Will you wilt under criticism, or will you follow your convictions?

Will you bluff it out when you’re wrong, or will you apologize?

Will you guard your heart against rejection, or will you act when you fall in love?

Will you play it safe, or will you be a little bit swashbuckling?

When it’s tough, will you give up, or will you be relentless?

Will you be a cynic, or will you be a builder?

Will you be clever at the expense of others, or will you be kind?

Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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

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

Well, I’m being schooled,  once again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Sometimes I feel down on myself

When I fell sick, I lost a lot of time, a lot of work, a lot of living.

I was so, and still am, fatigued that I could no longer do all the 1000’s of things i used to be able to do – which felt just natural to me. I had readapt my life, and find new ways of coping and registering when things were becoming too much.

I would be lying if I said I knew my limits now, years on. Because I don’t and some weeks, after weeks of being on the grind, I find myself on my knees. My fatigue levels effect how I cope with the pain in my body that’s always ever-present. My 2 year long headache becomes literally unbearable, to the point one day a few weeks ago i literally  physically had to crawl up the stairs to my house, and to my room, and my neck & head hurt so much i couldn’t  move/lift it – i had to just lay in bed for 15 hours. Then I got shingles for the bazillion’th time.

These – what I call relapses – affect all the habits that I’ve put in place in my life to try and be better.

The fitness ones are always the first to go.

Then any work habits i’ve put in place to help try and ease my weekend workload. So it makes my work much slower, and if I say something could be done by Monday it works out next Monday.

Any healthy-cooking-eating habits, gone. Microwave meals or noodles take 4 minutes and I can go to sleep.

I start becoming even worse at replying emails. And i’m no longer the best like I used to be when I’m on a roll.

And it makes me feel even more like crap. Like  I can’t do normal things, I can’t have a work-life balance. That I feel like I’m letting people down and can’t owe them the time they deserve. I start mourning my old life, again. Like, why can’t I go back to the pain-free no fatigue smizz? And I feel resentment and shame upon myself, like why can’t I fix myself.

This is a regular cycle.

 

Now, the human body/mind is amazingly resilient – and I have adapted to regain some normalcy – i’d never be able to tell you how. Just years of trial and error, of living with it (although sometimes it makes me wonder what even kind of life is this, is it even worth it). I’ve made sacrifices. But I’m glad I can still lead my life to this level and hope it’ll slowly get better.

But this doesn’t stop me wondering how I can fix myself and why I haven’t be able to so far.  I feel like I’m personally failing.  I feel like I’ve tried everything. From mental health, to physical,  to spiritual health. And nothing works. Nothing gets rid of this fatigue. Nothing gets me closer back to my old pain-free life. Where I could multi-task, and just like, never feel tired.

I feel like a wuss talking about it, because you know – I am ALIVE. and am able to lead my life to probably about 70% on good weeks.

But when it’s never ending.

When you don’t feel like yourself.

Like when you constantly feel like you’ve got the flu.

When you’re just left here, hanging. Alone. Without anything to grab hold of – to hoist you back up. With no map. No torch to see through the darkness.

How do you get back?

Sometimes I feel down on myself. Even though I know I shouldn’t. But I do.

I wrote this post a year + ago on what it feels like to have ball-breaking fatigue. And it remains exactly the same today & i think it’s important to re-share it. Because I think fatigue is such an misunderstood thing – like no one knows how dilibertating it is, until you experience it for real.

Check it here: https://smizz.wordpress.com/2014/06/14/discussion-what-it-feels-like-to-have-significant-fatigue-rather-than-just-being-tired/ 

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The world isn’t yet done.

Being freelance and working from home, I slowly turned into a sucker for cooking shows like Masterchef, The Great British Bake-Off, The Taste, Come-Dine-With me, and almost anything on the Food Network. No cooking show was too long or too low-brow and underproduced for me.  I thought it was probably an age thing – I never watched this stuff when I was younger: turned out it was just a love of different foods (probs due to aging-maturity) but I think it was more to do with avoiding doing work/relaxation thing. This became clearer as a healthcare student – I watched these shows even more religiously. The MasterChef series is ALWAYS on when I’m trying to revise for exams or have 100 deadlines. Trying to avoid reality.

One day after clinical placement, my housemates and I sat down with our food to eat and watch food on the TV. This was a show about a bunch of chefs trying to make it in this Italian restaurant/bakery engrained in tradition and processes. One of the young chefs tries to take a bunch of short-cuts and the older chefs catches him – and tells him off – saying, “that’s not how we do it here! We do it the long, hard, stupid way”. Which is stuff like not using yesterdays bread, making fresh new bread instead, making the soup from scratch. ect ect.

And this really stuck with me. The Long-Hard-Stupid-Way.

I think I do everything the long, hard, stupid way. I often get told this. If there’s an easy or a hard way – you can guarantee that i’ll find the hardest way first. My mom says it’s because I don’t have any common sense.

But I started thinking about the routes I’ve taken to get where I am now. And I wonder if I could take an easier path – would i have taken it? The answer is probably no. And I started finding pleasure in reflecting upon this rough, hard-stupid-way path.

There’s a whole spectrum of – here’s the long hard stupid way  – which is ultimately the way I seem to be compelled to make & do things, and then at the other end we have super efficient way over there.

When you work the long hard stupid way – it looks a lot like worrying, scratching new ideas, endless notebooks, trying to learn things you’d never dream of  doing before, it’s a lot of others looking at you like you’ve got it wrong, it’s staying up late and then having to get up early the next day (killer), it’s not returning your library books on time,  but all of these actions are inspired by just caring a lot.

That’s not to say you can’t be efficient and not care deeply – but i, personally, don’t know how to do that.

But behind the long-hard-stupid way is a gift. It’s a lot of heart.

It’s staying up late, and sketching out plans and learning how to code smart-phone apps (FYI – it’s not the same as making a website which I originally thought it would be. Just because you know italian doesn’t mean you’ll be able to speak french), and taking the time to make it – without ever thinking about having a plan to make it accessible. Turns out making apps is a rollercoaster.

It’s going through a really testing health-issue, that literally breaks who you are – and makes you question everything you are & your worth– and going through the system that doesn’t know what to do with you – because you’re not a child and not an old adult – and instead of being a normal person and try and change the system from the outside, you decide to re-train and try to make the difference yourself,  inside the system.

It’s deciding to apply for things you’ll probably never get accepted to do – for the love of learning new things, and the process, and meeting new people – & ultimately hoping that the rejection and the attempt itself  will lead to more change and things to build upon for the future.

And most of all, it’s deciding to do all of it together – at once. Long-hard-stupid-way.

Freelancing is often the long-hard-stupid-way. You’re never sure how much work you’re ever going to get. So you just say yes to pretty much everything, just on the off chance you hit a lull and therefore you’ll still have some money coming in.  All the while – burning yourself out. The thing is, you always work more hours than you get paid to work. Life-work balance is hard to strike. And you can never officially take a sick day.

Working alone is hard. Being your own investor is hard (& stupid sometimes). And running all of these things together – teaching, app making, website designing, conference drawing, illustration commissioning, clinical-student-ing, academic-working – all while feeling crappy & being broke- is super long, hard  & stupid – and to do it responsibly is even harder.

Learning to work your life-balances out is hardwork. And it’ll probably take you some long-hard-stupid-ways before you know when is the right time to say yes and when to say no. A friend of mine when i was feeling so awful from fatigue & I felt like i was letting people down told me – you gotta say no if you really want to say yes.

Would i have ever wanted to go straight into healthcare from school? The answer would have been hell-naw. I didn’t have the empathy. I didn’t have the experiences I have now. I needed to experience the hardship to gain the drive.

So even though the long, hard, stupid way is just that, what it produces is something cool. When we work this way, it sort of gains an empheral quality. It’s sort of in the air – everything always feels up in the air. Whenever we make things this way – either for ourselves or for other people. There’s some kind of value in that. And that value exists outside of commericalization or money. And I love that. It sort of becomes a gift.

The thing with gifts is that – you have to be given a gift. You can’t ask for one. The more a gift moves, the more value it gains (has it been passed on through the family, does it fill a gap – a representation of a bond, is it using someones time) — like wise – the more work you put into something – the more value is gained. Ultimately a gift  is a sacrifice.

Essentially the best work I do is when I say something or do something or give something , to really help people (in every/any way), or to people I really care about.

But the biggest potential is that – Doing things the long, hard, stupid way – you learn all sorts (mostly wrong things) – but you get a gift. Or you create a gift for others.

It’s that you can build a foundation or something for people. My practice is driven by my  belief in making things for other people. Whether that’s making time to listen and to help, making something to make people think, making something that will better their experience, making something that brings people together, to make someone laugh or feel heard. By making something for other people, by considering someone else it moves the edges of our beings closer together and we gain more overlap in the process.

And we should look at these overlaps, to talk to each other. to know what we all have in common and to create more situations to create more commonalities. And by doing this we can some how grasp the wonder that is so hard to grasp – of what lies in the heart of making – and making things the long, hard, stupid way.

And when I think about all the awful things this government is doing and pushing through – from ruining the NHS, and demoralizing Junior Doctors, to entrenching a future generation in 50,000 + debt for education, to cruel benefit changes, to making students criminals if they can’t pay back their student loan immediately after they’ve finished university, to trying to get rid of our human rights, to airstriking syria, to stopping free dinners for children who can’t afford to eat. It makes me so, so, so angry. And even helpless.

But the long, hard, stupid way is all about continuing to try, push and make something – we don’t care about barriers – or the challenges – or even the outcome: the gift that comes out of making things for others shows and says for  us to stop, look and look around us. It says everything is possible again. And the world isn’t yet done.

If we can find the courage, and the strength to make things (whatever that is) for others, we can give these gifts back to one another. There’s so much more what unites us than what separates us. People power goes a long way – even if its the long, hard, stupid way.

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