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!

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What My Teeth Are Teaching Me About My Past & Politics

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

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

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

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

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

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

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

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

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

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

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

 

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

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

 

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

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

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

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

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

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

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

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

 

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

BUT why did I write this post?

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where wonder reigns and hope exists

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Where wonder reigns and hope exists…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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A New Way. Can You Help Some People Who Mean Alot To The World, and To Me?

Throughout our lives, we will come to find ourselves in a lot of different places.

A lot of different rooms.
A lot of different corners.
A lot of different wheres.

Those wheres will be unexpected. They will surprise us, scare us, change everything, change nothing, and break our hearts.

I’ve found myself in some pretty amazing wheres, and some pretty devastating places. But one of the constants was having the opportunity to be part of Postmasters Gallery, and to continue to feel like I am part of their huge art family.

And that’s why I am asking you to be a Patron and help support them to keep making the artworld more radical, more daring and the world a better place to be – for us all. 

Furthermore, outside of art, The Postmasters Family helped save my life… and helped me get back onto the path of trying to live my life.  See Postmasters aren’t just a normal gallery. They’re everything and more. They’re community, they’re bravery, they’re hope, they’re protest, they’re US.

Let me tell you how, and just how their Patron rewards will LITERALLY MAKE A DIFFERENCE to YOU if you invest.

In 2008, I got to chance of a lifetime. I had decided the previous summer (2007), whilst working with steadfast ambitious & economically supported college-aged Americans, that I needed to catch up with my life and career ambitions. And my career ambitions was to be an artist and to live and work in NYC. Preferably in a gallery. This was no small-feat for an under confident, working class kid from Doncaster, UK (DONX!).

I worked at a bookies and at a toy-shop part-time during term-time,  whilst praying to the art gods that I’d get my artworld NYC summer. I did anything to make sure I could afford to go.

I remember exactly where I was when Magda of Postmasters Gallery said she’d meet me in person with the chance of getting to be Postmasters’ intern the summer of 2008. I was sat with my friend James Cotton in the Graphic Design-Apple suite at the old art campus. It was a super sunny day for the winter and the sun was blinding through the large windows. I just-re-read that same email, over & over again. I still have it archived even though I no longer have that email address (at hotmail.com?!).

I remember being incredibly nervous. I think I was practically mute for the first 2 weeks of being at Postmasters. But I learned so much.

I learnt around 26 years of Postmasters Show history, and art history in the making, as I was set to digitalizing their whole archive. Endless slides to be scanned, and amazing write-ups of artists in ArtForum, NYT, Art In America, et al – of still practicing, artists who have since disappeared, but a theme emerged.

These shows were often groundbreaking, urgent, courageous, some genuinely funny, ahead of the curves. New Media Art shows before new media art was accepted as it is today (though we still have ways to go with this medium). Women artists equally represented, and mostly – it still felt contemporary, and alive and represented the values that Magda and Tamas have sought to bring to the artworld their whole life.

I also learnt how to send invoices via fax (though still not into faxing), I met some of the coolest artists who continue to inspire my practice today, about art museums collections & how they buy art for them, at one point – I was left manning the whole establishment for a week?! and I learnt loads from Magda and Paulina’s experiences and ideas.

I was properly schooled that summer I was at Postmasters. I remember leaving after my last shift and I walked down to 9th Ave, and had to search for a working pay-phone to call my mom because I felt so sad I was leaving this amazing thing I had sort of been apart of for a short time.  I left that summer with my heart heavy but inspired.

I got back to the U.K. and art school felt kind of boring after that experience. I had to do something. Magda taught me that literally, anything is possible, even starting from scratch, along as you have perseverance, some people and community who can support you.

So my friends and I started our own lil’ artspace called CAKE (rebranded CAKE Everyone). We were a small space above a bar on West Street, Sheffield, UK. We lasted around 2 years and we learnt loads and had so much fun. But the thing is, I took everything I had learnt from Magda & Postmasters, and I put it into action in Sheffield – and invested it back into our local community.

I am still employing these lessons from this time into my life and practice.

Now, it would be easy to say – I became, like, an awesome artist, or got lots of gallery jobs… but because i’m not very smart or that talented, that didn’t really happen (and that’s ok!). But the year after I graduated was HARD. I nearly lost my own belief. But Magda offered hope and advise on the end of emails. That really helped me push through what I thought was a dark time…

Then things started to work out… I got a residency at SITE Gallery, I was working freelance as an illustrator, doing some university lecturing… I came over to work a summer in Boston/New Hampshire in the U.S.A.  but I had been feeling poorly for a good few months before I went… tired beyond belief, coughing up blood, endless nosebleeds, bone-pain, flu-like symptoms, drenching nightsweats.

And on the 21st August, everything changed. I found myself sitting in front an oncologist at General Mass Hospital. With my YMCA boss, 3,000 miles away from home. The doctor cleared his throat a few times and told me it looked like Lymphoma… Cancer. He told me, if it was time-sensitive and I didn’t get it sorted then I would die.

Well. As you can imagine, that wasn’t the news that I was expecting. I didn’t tell my mom for weeks (I was only 24). I felt ashamed, I don’t even know why. I thought it couldn’t be true. I googled the odds every-single-day. My boss kept telling me I needed to go home. The only person who I decided to tell who I didn’t work with — was Magda.

Because Magda was a person I knew I could trust, and always has a no bullshit take on everything but has an aabundance of empathy too.

After a crazy 32 U.S.A. state roadtrip (yolo!) Magda & Tamas put me up at their place, Magda cooked me an amazing breakfast before I left the USA for unknowns at home, not knowing whether I’d make it back again.

But the story is more complicated.

Magda nearly saw me go under. A few times.

I just had no energy. I laid in bed. Feeling sorry for myself. I was in pain. I was really sick. I couldn’t even watch Netflix. But Magda & Paulina would send reassuring tweets and emails and I slowly kept it together.

I worked harder at building my art-practice than on anything in my life, though it never felt like work. I devoted myself to it, though it never felt like sacrifice.  I am also endlessly grateful. Those years gifted me experiences, skills, lessons, and friendships. I would not be me without them.

Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it your life.

I had struggled to get back, but my heart wasn’t in it in the same way.  I simply craved a new challenge. It didn’t matter why — I couldn’t lead  my life in the same way, and I had promised myself that I wouldn’t be caught without a plan if something happened to me again.

I realized I couldn’t have my old life back, but I also didn’t want it anymore.

So I decided to go into healthcare… radiotherapy & oncology! Of all things. But I’d kept all this secret from most people. It was furtive, shadowy work, and the secrets made my stomach ache.

 

But I reached out to M, and I hoped that she would still think I was an okay person.

The wild thing is, Magda still helped me through emails – giving me incredible advise and inspiration for my healthcare practice. To the point that I realized that I was still a fucking artist. I had got lost, but she never stopped helping me find the tracks back. I’m now doing my PhD combining all of my double agent status’ together. Just insane.

But here’s the thing about the Postmasters Fam., is that they don’t let you down.

Magda once said to me that we get dealt the cards that we get dealt, but we play them like they’re fucking Aces.  She has taught me that experience is subjective. We get to decide what’s devastating, what’s beautiful, and what we do next. In the books of our lives, we are both protagonist and narrator. And narrators have incredible power.

In writing this, I thought a lot about the places that shape us, and how, in turn, we shape those places in our minds. Postmasters have really shaped my life, in so many ways.

As human beings living on earth right now, we find ourselves in a very particular where.  The art-world mostly sucks, because it works for the 1%, lets not even talk about politics.

But this is something we can all help, maintain, and be a part of. Help sustain the legacy, help to make the future, help to secure a better history. Look down at your feet and decide what that means.

Instead of being afraid, I’m going to try to be brave. Instead of feeling regret, I’m going to focus on getting better tomorrow, and instead of hoping that someone else will say it or move it or mean it, I’m going to do it myself.

Postmasters has been there for us (in ways you might not even know yet!) so lets me THERE FOR THEM!

And as I’ve just shown you, the $100 or $500 a month reward will LITERALLY CHANGE YOUR LIFE. I can’t stress enough how much its worth it.

Let’s make art, and friends, and purpose, and be good to each other. And please spread the word!

If you got this far – Thanks!

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The Year of Zinc

I’ve not blogged in ages. I keep reflecting, but it’s stored in hidden word documents on my laptop – sometimes making an appearance at a conference, or on my Facebook – in the safety of friends and not just the internet-public.

But I’ve been thinking about getting to 30. Alive. I really can’t believe it.

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On the periodic table 30  is the element Zinc. Roughly one third of all metallic zinc produced today is used in a process known as galvanization. During galvanization, an object that is subject to corrosion, such as an iron nail, is given a protective coating of zinc. I like the idea that my new decade is started with the year of Zinc: an element that is most useful in trying to stop corrosion.

5 years ago, an event happened that changed my life. Some of you where there, and others have followed the progress reports. But, honestly, i think it’ll take a full ten years for me to understand the impact and outcome of that one event.

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Life in many ways is like a paint by numbers book, where you can colour, one tiny bit at a time but within invisible lines. The whole picture emerges much later. Perhaps Steve Jobs said it best:

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever.”

A decade ago, today, if you had asked me today if my life would turn out the way it has done — I wouldn’t have been able to answer that question. In many ways, life has been so much better than I ever really thought it would be!
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Getting to 30 isn’t really big news, but it’s a biggie for me, and ANY of my friends will vouch for me – I never thought I would make it to here. I thought this at high-school. I guess living in abject poverty makes you feel like this – like there’s no future. And this was even before I fell sick. But then when I did fall sick, I would look at what was happening to me and how i felt and thought for sure I wouldn’t be alive by now. At times, I actually didn’t want to live. Like, I just felt like I couldn’t live with this kind of pain – for the rest of my life – without someone understanding what this experience was doing to me with me.

So, I’m really grateful to be getting here.

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Despite this being kinda big news for me, i’m surprisingly anxious about it all too. I still feel 21 in my head. I still get I.D’d for booze at bars & M&S when buying BucksFizz, and if I’m really trying it on, I can still get Teen cinema tickets at the local Odeon.
My life is that of an 18 year olds. I moved back home, have no kids, no pension, basically a few $ in savings, the worst credit history – ever. I’m still a student, albeit I prefer researcher now (PhD). But getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost confidence, and money and I spent a whole lot of it when I got it — YOLOing or trying to find cures for my fatigue (all didn’t work BTW).
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By societies standards, I’m not a success. And I can feel it. I should have *done more* by now. People my age are consultants and own houses, and head-teachers and more. And it’s hard not to compare yourself. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.
I mean, I am alive. I do think about that a lot.
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Confronting mortality makes you ask some fundamental questions of yourself and your relationships. It makes you a lot more honest with yourself. It forces you to say no more often, for you know the fleeting nature of life, the minuscule time we have on the planet and what matters is how we choose to spend it. And how you choose to act aswell.
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But 30 years is a long time to have witnessed change and fragility.  Over the past 5 years of ‘illness’, I realised that BEING alive and FEELING alive are 2 different things. And what I’ve learnt over 30 years is what Oprah’s words from her Golden Globes speech encapsulated:

“What I know for sure is that speaking your truth is the most powerful tool you have.”

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I recently read Dr Rod Kersh’s response to Henry Marsh’s guardian article  on the treatment by the legal system and the media, of a transplant surgeon scaring in his initials into patients livers.

And it got me thinking about empathy, and dignity, and teams and Zinc. Rod is one of the most compassionate (& innovative) doctors I know.  I first met him like 5 years ago. It was my 3rd time ever at a hospital appointment. I still hadn’t learnt how to “behave” in these situations (i think i still struggle with what to say and what not to mention even now).  But I still remember our first clinic with clarity, exact words and phrases. He told me how he was going to treat/talk to me (like an equal).  And it properly threw me. I thought about it for weeks afterwards. It was a weird thing to say. But it properly made me feel like I could trust him, that I (my life) was important. This phrase was further backed up by his actions, because in trying to describe what was happening to me, i described it more in how these symptoms was really hindering my life. And he was super intrigued by this. He’s the only doctor (except the ENT doctor this week who was genuinely concerned with my massive hearing loss and my quality of life/future) who seemed to gauge what was important to me. I noticed that when people didn’t hear me out, it made me feel more desperate. (That’s not to say everyone else I see or have seen don’t care… because that’s simply not true at all, but there’s a difference in acknowledging).

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He, and a few of my HCP, inspired me to be the best healthcare professional I could be. I subconsciously learnt what was good care and what wasn’t as good as that. And now everytime I am with a patient, I remember what is important to me when I am in this system. And the differences in actions and languages. And I want to make sure people feel seen and heard. Feel like whatever they’re telling me that is bothering them in their lives, that it matters. That they matter. Despite whatever is happening. Because often people just want to be heard.

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Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it part of your life. For me, I realize that it makes sense that 30 is Zinc.  I am so endlessly grateful. These years have gifted me experiences, skills, lessons, and friendships. I would not be me without them because these people: my friends, teams, colleagues, working together – have acted like Zinc. 

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They have provided me with a coating, that has helped to ease the corrosion of life (from art, to work, to learning, to sickness and more). And in doing so have taught me how to be Zinc too.

You will never regret offering dignity to others.

We rarely get into trouble because we overdo our sense of justice and fairness. Not just us, but where we work, the others we influence. Organizations and governments are nothing but people, and every day we get a chance to become better versions of ourselves.

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And yet… in the moments when we think no one is looking, when the stakes are high, we can forget. It’s worth remembering that justice and dignity aren’t only offered on behalf of others.

Offering people the chance to be treated the way we’d like to be treated benefits us too. It goes around.

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

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

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

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And going forwards in setting the tone to my next decade is just that. To be Zinc: to help, share, collaborate and support. To be compassionate and empathetic.  I will do whatever it takes.

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

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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?

Expect anything worthwhile to take a lot of time

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

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

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

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

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

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

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

But alas,  both healthcare and creativity is complicated.

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

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

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

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

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

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

So how do we do this?

First step: embed it back into education and learning.

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

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

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

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

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

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

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

Step 4: Believe in the learning loop.

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

 

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

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

 

 

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

(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

cm3qiibukaa0-9i

Help Aleppo Smizz Print: Lets Be Kind Again

I’ve been watching the tragedy of Aleppo for months and months now. Slowly, and slowly getting more and more, and even more horrific. I never thought that in 2016 we would be looking at the world through fear like we are now – a world seemingly well connected, a whole history to show us how it will never pan-out well for either side. But here we are.

I read article after article about the genocide that is happening. And I feel incredibly powerless. I know we all have stuff going on in our lives – like trying to make one pay check make it to the end of the month, being sick or looking after a sick loved one, wondering if we’re going to have a job by the end of the year… etc. And these are no small-feats. But I sit and look around my room, at my mom and my dogs, I look at my Facebook messages with my bro, and i look at the christmas tree with it’s sparkling lights. I think how lucky we must be to not live in that kind of fear (or at least yet.. who knows what the future holds at the moment).

And I can’t just watch the world burn in horror without trying to do something. However my skillset is small. And my debts are massive. Since we raised around £1000 for Doncaster Detection Trust this year, I figured maybe another drawing could do the trick to help raise the money and the funding to get the help that the people of Aleppo so desperately need.

So here’s my first print. They are all limited edition of 100, signed.

A4 in size, printed in matt. On heavy 220gm paper.

They will be posted to you after christmas.

Starting donation at just £5. All money I will split equally between The White Helmets and Doctors Without Borders/MSF 

Make the £5 (or more) donation to Paypal. PLEASE ADD £1.50 to cover postage too – unless your donation is over £15. I will cover the postage costs for you for your IMMENSE generosity.

DONATION HERE:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=SWMGL3DWTSVPQ

Email me if you have any issues or questions! smizz@sarahsmizz.com

Thank you for taking the time to look, and even more MASSIVE thanks to everyone who has already donated to get this print.

Lets Be Kind Again (we can be the change!)

(More prints coming soon too)

letsbekindprint