Tokyo – a metropolis of dreams. It exists in a haze of past and future, quiet and super busy, organised and chaotic. The super-mega-troprolis is home to more than 35 million people: The biggest city in the history of the world. Put that into context for the UK. We have an overall population of 66.8 million. Which would be half of the UK population is living in Tokyo metropolitan area.
Despite a huge population, and what you see on TV – it never feels insanely busy except at the world famous touristy spots or the super-peak time on the subway/train. Outside of this – it often feels like it exists *just* for you.
Warrens of streets and alleyways – one leading onto another, never ending, but at the same time you are hoping that it doesn’t end either. Each area has a creative and beautiful type of lampost/light shade. The city exists in layers. Like a complex photoshop file. There’s basements with basements, shops with lifts that takes you to secret bars, there’s the odd door way that leads you to something you would have never guessed. Streets lead into shopping centres, shopping centres lead into arcades, arcades turn into parks, parks turn into temples, temples into houses, house into garages, garages into the best ramen you’ve ever had.
You could just walk one street in the centre of Tokyo of half a mile for half a day and you’d likely never find everything there, or expect to find the stuff that you do.
There’s a store for everything. If you can’t find it in Tokyo, then it doesn’t exist.
Here I can get the amazing Hawaiian drinks we drank for super cheap in Maui but are basically unavailable anywhere else on any mainlands. I can find any stationary available anywhere in the world here, but so much I can’t ever find in the UK. There’s shops dedicated to just the soul beauty of the pencil or a place that only sells lucky cats. There’s stores dedicated to the selling of things you need to make your own temple, small tiny spaces covered floor to wall & even ceiling with any kind of electrical lead/wire/bits & bobs you can imagine. Anything you want – Portuguese tarts, New Zealand s’more cookies, British pub food, worlds best burger, worlds best ramen, worlds best chocolate – Tokyo has got your back. And this is even before we get to the stuff that really matters – places dedicated to making paper, places securing 1000s years of tradition and passing it on, the way that everyone cares for the city – you could drop your sandwich on the floor in the middle of the street & it looks so clean you’d probably pick it back up and continue to eat it.
I don’t think I have ever seen a pothole in any of the roads of Tokyo. I’m not sure I can say that for anywhere else I have visited.
It’s in Tokyo that I realise that I am a person who waits. There’s a lot of queuing. More lining up than here at home in the UK. Lining up for ramen, lining up for the train, queuing up for a shop. Every few minutes, the noren curtain hanging in front of a door would twitch, discharging bodies into the Tokyo dusk, and we would steadily shuffle forward.
I am not really a person who usually likes to wait for things (thus my clutch onto Amazon Prime despite knowing how unethical it is). At home, if a friend suggests a meal at one of those tremendously cool restaurants that doesn’t take reservations, I’ll agree only if we eat geriatrically early or owlishly late. I politely reject any brunch plans that involve putting our names on a list and then hovering on the sidewalk for two hours.
It’s impatience, I suppose, but also a sort of brutal rationality: On one hand, there’s the value of my time, and on the other, there’s the value of whatever’s at the end of the line. The latter never really seemed worth that much of the former.
Public space is scaled so much better—old, human-sized spaces that also control flow and speed,” Dixon notes. In Japanese cities, people are accustomed to walking everywhere, and public transportation trumps car culture; in Tokyo, half of all trips are made on rail or bus, and a quarter on foot. Drivers are used to sharing the road and yielding to pedestrians and cyclists.
But here we were, H, R & me at that moment, 14th,15th & 16th in line waiting for a highly rated Ramen place – down a nondescript alley, just around d the corner from a super expensive department store in Shinjinku. Surrounded front and back by locals, part of a neat queue that snaked out the small restaurant’s entrance to the curb, where it broke for the tarmac only to pick up again around the corner onto a busier street. Every few minutes, the noren curtain hanging in front of the door would twitch, discharging bodies into the Tokyo late morning rain, and we would steadily shuffle forward.
We were there to eat 1 of the best Tokyo Style Shoyu Ramen, the specialty of the tiny restaurant after walking in the rain through Shinjuku Gyoen. The place is presided by a few wiry ramen masters who are all rocking a blond, boy-band coif, who dances around behind the counter, boiling and draining and plating their food with the percussive flamboyance of a flair bartender. Shoyu is a type of ramen made with chicken stock and shoyu is mixed with dashi to produce the unique Tokyo style Ramen. Tokyo Ramen is usually served with Chashu, Kamaboko, half an Egg, and is topped with chopped leek and preserved bamboo shoots.
Once it was our turn at the door, we make our orders on an old machine that’s all in Japanese and has pictures of Ramen but you can’t see really what type of meat. Being tourists, but eager to YOLO and not look foolish – we all select whatever R is ordering because he knows his food-stuff. We leave the door and wait until 3 seats become free and our order gets made fresh.
Queuing is a big deal in Japan, a physical exercise of the principles of discipline and etiquette that are drilled into every schoolchild and reinforced for every adult.
When, at last, we are waved over to a pair of seats, we watch these amazing chefs – ramen masters – prepare our dishes and they ask if we want a bib. I’m the only one who obliges but. I’m glad for it as we are all bent hungrily over our bowls, slurping the soup everywhere. Like a child & their favourite dish. Every part of me feels warmed up, and extra alive – electrified. I put my hands gently around and over the bowl. Feel the warmth and heat from the ramen. As we slurp down delicious food, we are semi-eavesdropping on the still-waiting people pressed into the narrow space behind us. “This guy is supposed to be the real deal,” an American man says to his wife.
If there’s one thing that you learn about the Japanese as a people is that they are incredibly dedicated, humble, serious, and deeply respectful, and honour driven. While it may seem like “just a noodle shop”, there’s an unspoken code of conduct that every local knows but for us as foreigners may not be as intuitive or obvious.
Consider this, most of these “rules” show that the culture is deeply rooted in the idea that as a customer, it is an honour to be able to eat the food a ramen master since we’re not able to make it ourselves and therefore respect is part of the tribute that you pay. This is craft that most chefs spend a lifetime to perfect and usually without any thought of seeking fame or fortune.
Take a second to let that sink in. This is very different from other cultures right?
I’m not a super plan-ahead kind of traveler, but Tokyo is a plan-ahead kind of city. So if you don’t book ahead, you have to queue up for hours before.
People line up, without apparent impatience, not only at ramen restaurants and store cash registers, but to board subway trains, nab a taxi at a stand, and enter elevators. After the 2011 Tōhoku earthquake—an event so tectonically powerful that it shifted the entire main island of Japan eight feet eastward and spat up a towering tsunami that ravaged the country’s northeast—the world watched in awe as millions of affected Japanese refrained almost entirely from looting, and instead waited in calm, orderly lines to receive supplies, sometimes for 12 hours or more. Next to that, how can my aversion to a queue mean anything at all?
One night R, H and I walked miles from Shibuya through it’s cool neighbourhood Shimokitazawa – it’s style is more hip and grungy than the polished global cool of Shibuya and it’s super quirky cutisy vibes of Haraujuku.
We walked up purple neon hills, seeing the city sky line happen below us, alongside train tracks and through dark tunnels. As always, Tokyo is always eerily quite, but it’s safe. We walked past Japanese baseball stores, off the beaten track pizza places, cool bars, record stores, and more weird shops. We walked until we got to a hood called Ebisu. Where I think had the best burger – and certainly the most delicious Japanese fried chicken.
We walked across all of central Tokyo neighbourhoods. I achieved my goal of seeing the place – with my own eyes.
But it took us time and Tokyo makes you a person who waits.
In the dim light of sunrise, we get up super early – an hour before to get train tickets for Mount Fuji. The time we wanted was already sold out.
We lined up for all kinds of foods and drinks and much more in between.
At the end of all those waits was, invariably, magnificence: The most jewel-like sashimi. The lightest pork cutlets. The richest, deepest, most exquisite ramen broth I’ve ever had.
There’s a phrase in Japanese for places like this⎯gyouretsu no dekiru mise: “restaurants that have very long lines.” The lines are often self-fulfilling prophecies: The wait isn’t part of the cost, as I’d always considered it; to a Japanese person, it’s part of the value. When presented with two vendors selling effectively identical products, the Japanese choose whichever one has the longer line in front of it. Making it through a long line is a praiseworthy feat of endurance, and long queues for one thing or another are always in the news.
As I committed myself ever more deeply to my new practice of patience, I wish I was shooting on film. I was missing my 40-year-old camera , which has no LCD screen with instant preview—instead I had opted to try and do moving film this time. Except it drained my battery and I had forgotten my plug adaptor. So Just like 35mm, each frame became precious, which means you need to make it worth it. You need to wait for the shot.
That’s what I was doing when the strangest, most wondrous, most ineffably Tokyo part of my time there happened. I was sitting on the stone parapet of a bridge over a canal in Nakameguro, a crushingly lovely neighborhood on Tokyo’s southwest side, waiting for the sunset colours to hit through. It was almost surreally pink.
I would be leaving Tokyo the next day, and I was on my last charged battery.
Tokyo is a magical place. I knew this going in, as I’d been before and was now hooked on it, looking for my next high. Every great city is magical, a unique alchemy of climate and culture, of the past and the future. But in Tokyo I found a magic of extremes. It’s a fast, crowded, chaotic place, surging and staccato—until it’s not. You’ll turn a corner onto a side street, or the minute hand on your watch will tick over the hour, and suddenly all that urgent density falls away. The city is a pattern of movement and stillness, sounds and silences.
What I found, as I let myself relax into being a person who waits, is that even if you’re standing near roaring traffic—or in a subway station during the crush of rush hour, or in the riot of a department store—inside the act of waiting, there’s a form of quiet. As my days in Tokyo passed by, I felt myself undergo an almost physical change: In the scurrying chaos of a dense megacity, my restlessness retreated, my breath slowed. I could feel something else emerging inside me, a blanket unrolling over a rumpled bed, a calmness that was neither contentment nor boredom.
Today’s been my last full day in NYC, and in America. And I’m a bit sad about it.
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.
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*
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.
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.
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!)
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).
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.
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.
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!
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.
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?
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!)
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.
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.
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!
Tomorrow, I leave to go to Krakow, Poland with my bro & his girlfriend. It will be my 2nd time there. I can’t wait to eat more proper Polish food!
But I won’t be here in the UK for the last bit of the General Election campaign. I’ve spent a good few weeks knocking on doors, writing much too long facebook posts trying to debunk Tory lies and records for people, endless retweets, lots of leaflet posting. So, I’m both REALLY REALLY nervous for 8th June, but i’m also welcoming this social media break – where things can become a bit more distant.
So I write this post here, to ask you to consider helping Labour, or voting them in 8th June.
Last Monday, I was invited to the Houses of Lords reception to give a small speech. I was invited by Lord Professor Robert Winston, for Sheffield Hallam University – to talk about the “Hallam Difference” and what I think this is, and what it has meant for me. (File this under UNBELIEVABLE SMIZZ MOMENTS)
I talked about my challenging upbringing in poverty, that ended up including fleeing from domestic violence and homelessness. It included the low self-esteem I had ( & still have to be honest), the crushing imposter syndrome, the failing school *at the time* I came from to get to university, how I was the very first person in my family (& still am) to finish school and then go onto university and then later on after everything started going well, falling poorly and everything getting messed up again.
But within this was support networks that stopped me from falling into real despair, or getting lost in the cracks in the system. Hallam has outreach teams who worked with me to get to a university, a Labour government at the time had funded 1oo’s of policies and projects that stopped my life from being increasingly worse – such as Aim Higher, EMA, Sure Start Centres — all helped me stay on at school. Policies that helped my mom financially, a few more council houses that we don’t have at the moment (though it was bad then too). Maintenance grants so I didn’t end up in MASSive amounts of debt from university.
And once I got to university – the people made it everything. Hallam gave me the environment and the belief to build my confidence, to make friends for life; it made me feel seen / heard for the first time in my life. I felt like… I kind of… fitted in…. I was able to see a future for myself for the very first time in my life. Rather than just living day to day.
I was able to fulfil my whole life’s dream of being an artist and working in NYC in an amazing gallery, no less, with truly amazing people who became my mentors & inspire me to be better – and work with families of all kinds in Boston, doing art stuff – and when I fell sick, they paid for all of my medical bills when I was over there. Literally, they all came together to help to save my life.
When I came home, and I was angry at myself for becoming sick… for becoming broken… and not knowing how I could stop it, I just couldn’t figure out how to fix myself… my life had to be changed to adapt what was & contines to happen to me – and I was NOT happy about it. This jarring experience was eased when I met incredible NHS staff who helped me feel heard and understood in a way that really touched me. I can’t put into words how compassion makes you feel when you’re at your most vulnerable. And I realized I wanted to take all of these experiences, use my own skills, and give back that time and kindness to the NHS and its future.
And Hallam was there for me again.
I got to tell a whole room of important people at the Houses of Lords – people who can make a difference – how hard it is to get to university from precarious backgrounds. And just how my life has been transformed by these experiences.
I wasn’t sure how it was going to be recieved, but afterwards loads of people came over to meet me, and would share their stories of humble beginnings too. Which showed me there’s power in vulnerability sometimes.
But Why do I tell you all this? And what’s it got to do with voting and how we cast the vote?
Well, I’ve learnt that too often the world celebrates good heart without acknowledging the pain and hurt that shaped a person and their direction. Life may throw a thousand harsh storms your way but sometimes (not always) we can use them to grow and be better and be more good from it all.
You will be lost and unlost. Believe in your craft. Believe in your heart. Believe in your ability to become whatever it is you want to be and to overcome these challenges that lay ahead for us.
But we need OPPORTUNITY to help us to get there. we need support, we need networks, we need friends, we need hope to keep going – we need to be seen, and *really* heard.
And I genuinely believe that this Labour Government can DO IT for us. A lot of people are merely existing in the shadows. When I go convassing, some people say they’re not listened too – but here I am. Here is Corbyn – with a really truly compassionate (& costed) manifesto that really, really looks and understands some of the issues and problems and solutions to a myraid of issues within contemporary society and in all of our lives.
As my friend said tonight, watching Manchester Live makes me wonder at what point our counter-terrorism strategy finally evolves to include a massive investment in culture and the arts…
The Hallam Difference is a domino affect. Every act of kindness, I try (though sometimes I’m accidentally a dick) to pay forward. Every little action is big when we come together. Keep pouring your beautiful minds and hearts into what is right.
This week is a good week to flaunt your awesome. To show the world we’re compassionate, that we believe in people and not corporations.
That we are the difference in the world.
I will be watching the election progress from Poland at night, and I’ll arrive back to England to Exit Poll news. Let’s hope it’s better than 2015 – though as Ed Miliband said to me on the phone yesterday, “It’s the hope that really crushes you”.
I can’t cry again about another General Election outcome.
I got my 6th USA work visa approved on Thursday in London and now I can allow my trip to feel real.
It’s been 3 years since I had the real freedom to leave the UK for a long-ish period of time. I’ve been pretty poorly in-general and then clinical placement or school work and money had been other reasons. But I’ve pined for this opportunity again.
When I left America in 2013, it was with a heavy heart – I didn’t know if or when I’d be coming back. And I certainly believed that I wouldn’t be coming back to work, maybe only for a small holiday – if I was lucky. In fact, every summer I get to see feels like a blessing.
Last year when we got to do our clinical elective in Canada and Boston last year, I felt what I had been missing.
For the past 3 years I’ve wandered the streets of Leeds on sunny days and closed my eyes and willed myself to think I’m back in New York. The sun, the heat, the buildings when you look up towards the sky, people pushing past you and back to back traffic in the city center is enough to trick yourself that you could be in NYC. I go to the movies and the smell of popcorn and coffee makes me feel like i could still be in NYC. Sometimes I hunt down all the food I love to drink and eat whilst in the USA to try and muster that same feeling; thai-tea, pangang curries, guc, chips, salsa and good tacos. But they’re all weak immitations.
I frequently have dreams of just walking around NYC and they’re freakishly real.
So I decided, last year, whether I could afford it or not – that I would work really hard to get to spend my last summer there. In the place where I was broken and found. A place where it made me believe in myself, showed me the kindness of strangers – people who I had only worked with whipped around & paid for my medical bills, and treated me like I was part of their families. The country with many people who have helped me believe that I can be and am an artist. Who completely inspire me with their unwavering work ethic.
Just like Barack, all my life, I have been stitching together a family, through stories or memories or friends or ideas. And these guys helped me put it all together and made my stitching stronger.
But now it’s all real, all pretty much official. I’m going back.
I’ve had many years thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility to plan for the day when you can’t do it anymore. And it’s been hard.
I leave Leeds in 3 weeks. I arrive in NYC on the 17th June. We’re going to go to catch-up with amazing friends, go to art-openings, find the best bagel (still not managed it!), eat the best cheesecake on the beach, ride the Wonder Wheel, I’m going to draw, drink those favourite drinks of mine, sit in Williamsburg and complain how gentrified it’s getting, look over the city from roof-top bars and watch the sunset over the East River. I’ll wonder the streets at night, trying to take it all in – so I can continue to close my eyes and take myself back there when i need it the most.
Then we leave the crazy bustle of the city to go a place that’s pretty cut off from the world. Basically no internet. No public transport once you get off the island by boat. We’ll arrive at Sandy Island – an island in the middle of a beautiful lake surrounded by mountains and tress/forests in New Hampshire. This will be home til September. The moon sets bigger than my head here. Deer and bear roam, and you can fish or chuck pebbles into the lake from the sandy beach. And you can lay on the baseball field and watch the milky-way & countless shooting stars. It’s pretty magical. It’s a good place to try and figure things out, to learn how to reconnect with people without having technology blare out for attention at you. You can literally leave the ‘real world’ behind.
We’ll then leave New Hampshire for a quick stop in NYC and then to San Francisco, CA. I’m excited to run up the hills and skate down them. We’ll make fires on the beach and eat pizza whilst the sunsets. From here we’re going to Napa-valley, CA – drink some wine whilst paddling in fresh water in fields of vineyards whilst the sun sets. And go hiking in Yosemite, CA. We’ll go back to fly out to Maui, Hawaii (a state I’ve yet to tick off my ‘life-list’ – making it 43 states I’ve visited!). Here we’re renting an apartment on the beach with turtles. I’ll hunt down the best acai-bowls to eat, and we’re going to hike some volcanos, surf and relax on the beach after the relentless work this past 3 years has taken.
Then we’re flying back the Seattle, WA – I’ll be re-connecting with some of my friends who are artists working on really cool social projects. And We’re taking the training to Vancouver, Canada – then back home!
And I CAN NOT WAIT.
I’ll be chipping away at my bucket list – now re-named ‘the life-list’, making art, helping people with their projects, writing, taking photos, and working on myself, helping others. I’ve a million ideas for new projects, but I’m trying my best not to start anything. For a little while, at least.
Follow along if you like!
Life can seem so challenging sometimes. It’s a scramble up a rocky cliff that feels like it’s two grabs away from a landslide. But we’re not meant to do it alone. And we don’t have to do it all at once. Take time to take care of yourself and look back to see just how far you’ve come
“Time is space. You are moving through that galaxy. Wait for the stars.” – Matt Haig
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.
Medicine develops so fast, especially radiotherapy. But one of the areas we’ve not caught up with and developed is the design of healthcare. I know what you’re thinking. What’s art & design got to do with anything in healthcare, really? And if you’re thinking this – this basically uncovers one of the reasons why design is an issue – because no one is thinking about it.
Last year I made the first Radiotherapy Patient Information Smartphone app. RADcare. Just me. I drew it out on paper – big sheets of A3, pages and pages – in the library and in Starbucks, I read paper after paper on patient informational needs, scoped out what is already out there, thought about the pathway and critically reflected my time as a patient and doing first-day chats on clinical placement. After being a patient (not a radiotherapy one) I’ve always felt that patient information – from the letters that you get from hospitals with appointments on, to medical procedures to be flat, lacking in information that you actually need (Like where do you check in? ) and just depersonalised. If you actually get anything at all. Visually, they’re not very good either. It’s no wonder most people don’t read the material we give them. It looks about as enticing as getting a filling done at the dentist.
Then there’s the issues of – how one leaflet can’t really fit all. It can’t offer all the information you might want to know, it may also be in a format that isn’t accessible for people – like literacy is an issue.
And yet the government wants us to be more proactive with our self care – using the internet to try and gauge what we have is important enough to visit our doctors. But here in lies another patient information problem. We don’t know how reliable websites are for healthcare data and information. So when a patient, or a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.
So I designed this prototype smartphone app. I wanted it to be everything current patient information is not. Accessible. Even a bit cute. Detailed – but you have a choice on how much detail you want to access. And colourful. A mixture of formats – from animations, videos and text. And most of all – more personable with a bit of heart. I wanted to break all the corporate rules.
Whilst it’s so important to do your user-research first, and make the UX design user-friendly first before design aesthetics – I prepared it with research and aesthetics first. I knew that the coding stuff (I need someone to make it work better than my amateur coding can do) can be fixed later.
And Ku hits the nail on the head perfectly. I’m passionate about using art processes in innovating healthcare and it’s design away from mediocre. I jumped ship from art to healthcare to use my passion of trying to eradicate social-injustices and inequalities to try and make the patient pathway better. I know, from my work with NHS England and other healthcare organizations, that creative methods – from drawing patient’s experiences, and filming their life – are great and affective ways to make the patient feel heard and valued – and as a result – you produce something with much more worth and use. Because it was built with the experience of the people using that service/prototype/leaflet.
I think part of the worry with using more creative ways of designing healthcare comes from healthcare’s obsession with measuring outcomes. In a scientific way, too. This culture needs to be adapted – not just for innovation but also for our practitioners whose continuity of care doesn’t get acknowledged. That extra 10 minutes spent with a patient – with no boxes to tick to get measured – but it made a massive difference for the practice and the patient.
But how do you evaluate the use of creative ways effectively? How do you measure them? Is small-scale testing enough? It’s a mine-field.
So I hope you’ll help me. I wanted to try and use my app as part of my dissertation — just so my spare-time project gets some academic acknowledgement. I’m doing a design evaluation of the app – and I’ll be putting key-parts of the design online with some questions and one-on-one interviews. If you want to help me evaluate the design — i would be extremely grateful.
If you want to help me – I would love to hear from you! – holla at me on Twitter, or by email email@example.com
If you have any cool articles about heathcare & designing/art – i’d love to know about them too.
And if you’re passionate about making a difference, or about art& design and health care too – Let’s share an email or grab a coffee.
Here’s a taster of the app (My favourite but is skin-care guide) 😉
“If you change the way you look at things, the things that you look at change.” — Max Planck
I’ve written about it endlessly before, but I feel like I’m living a new – unexpected – even unwanted version – of my life. i’ve endured years and years of being in pain, delibertating symptoms and fatigue that made it so my old life didn’t fit the way it used to. My old life – and still does when I get close to mirroring it – drove me into the ground.
I love art. I love it with every fiber of my being. It was the thing that kept me awake all night, and i worked and worked and worked on this pure love of mine. It didn’t matter that it wasn’t really money viable – it didn’t matter that I kept 3 part-time jobs down as I jugged residencies and commissions, and writing endless proposals that would mostly get rejected. I loved it. I loved the potential for it to connect people, and ideas, and potentially make a change. Make a difference. I could never see a future for myself where art wasn’t in it. It’s still the thing that helped me keep a part of my self through the big change.
Unfortunately this tidal wave came begging to tear down my dawn, and made me struggle against it, made me choke on salt water. And it changed how i saw the world. I took a bit of a different direction — but I told myself, it would be with art too. But it was hard to see a future when I wasn’t sure if I was going to have one.
Trying to be arty and creative in healthcare is hardwork. Some people are suspicious of your enthusiasm, suspicious of your motivation – they don’t really understand you. Some people just don’t get it. Some people are amazingly visionary and creative and risk-taking too – and super supportive which excites me and I’m endlessly grateful for these people. But it’s hard. And my personal-art practice took a bit of a backseat in my eagerness to better the patient pathway.
I’ve been writing a proposal — another one that will probably be rejected – in true art form – but it’s reminded me of my old life again. Writing pretentiously yet beautifully philosophical sentences feels good for my soul. Writing emotively instead of just cold-facts – blunt, how do science people do it all the time? I can slowly feel the warmth coming back into my fingers and heart. I can feel parts of my brain working in a way that I’ve missed.
Conceptions of the body are not only central to medical anthropology, but also to the philosophical underpinnings of Being. Western assumptions about the mind and body, and the individual and society, affect both theoretical viewpoints and research paradigms. These same conceptions also influence ways in which health care is research and delivered in Western societies.
Foucault (1972, 1977, 1980, 1988) stated in his writings on biopower that medical technologies frame and focus healthcare professionals’ optical grasp of the patient, with the ‘medical gaze’ that abstracts the suffering person from her sociological context and reframes her as a “case” or a “condition”. Patients are seen as the voiceless, lost in a system that reduces them to their diagnoses, or not even that making the experience even worse, and often fails to understand their suffering. This is exemplified through my own experiences and was exactly the reason why I – the artist and experiencer – needed to change things.
Clinical biomedicine is the product of a Western epistemology. Healthcare professionals often struggle to view humans and the experience of illness and suffering from an integrated perspective, they often find themselves trapped by the Cartesian legacy. This lacks a precise vocabulary with which to deal with mind-body-society interactions, resulting in the disconnectedness of care throughout a patients’ pathway and beyond.
In writing this, I realised just how disconnected I had become from my own art practice — the person I was – and my experiences. I had to go through archives of old websites to remind myself on what I did in my art years for this application; the time before I fell sick, before I committed most of my energy to healthcare. It just seems like a distant memory now. And I was shocked.
It was like in a movie when someone discovered old, worn-yellowed newspapers of events they couldn’t believe happened. Here existed an amazing list of my achievements, that I had forgotten all about. The pain had erased them. Struggling to survive, and get through each day had taken its toll upon me. I had literally forgotten what had made me who I am. The crazy thing is, I struggled and worked so hard to achieve all of this. And it had disappeared as quickly as my old life had been taken. What amazed me more was how this was pre-bucketlist. I have since, began to tick a few of my other goals of my past life off, unknowingly. And I have achieved a bunch of stuff that became more important. (It’s als important to note – i’ve been drawing loads & getting paid as an artist/illustrator – it’s just not the same stuff)
But as my radiotherapy studying chapter is coming to a close, I’m starting to feel the eagerness to reconnect with my old life – despite still having all the issues that made me change my life direction in the first place. And it’s confusing.
“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” — Joseph Campbell.
I let go of the life I had planned, but the life that is waiting for me is unclear. I’m unsure what to do, where to go next. Healthcare doesn’t fully accept me for me, but art doesn’t either. It has so much commodity and rewards so much self-absorbed-ness . Life is precious and there’s suffering – which art can help aid – but the Artworld doesn’t understand what I’ve been through, and felt, and why healthcare needs to be changed so others don’t have that experience.
But who will accept me? And why have I written this? Well, if finding my old resumes and pieces of my old life dotted around like dusty digital footprints has taught me anything today – is that we should be archiving our lives, our work, just incase we do forget what we’ve done. If we forget who we are, or who we were.
And I also know that there’s people like me out there. This here serves as a reminder for future Smizz – who will probably be doing something else completely insane – like a career in maths or something else I can’t do. And for anyone else going through a hard time.
You gotta swim, swim for the music that saves you when you’re not so sure you’ll survive. And swim when it hurts. The whole world is watching – and you’ve haven’t come this far to fall off the earth. Currents will pull you away from your love – just keep our heads above the water. Memories are like bullets and fire at you from a gun. We all get cracks in our armour – but don’t give in. Sometimes the nights won’t end. But you gotta swim for your families, your sisters, your brothers, your friends. You gotta get past wars without cause, past the lost politicians who don’t see their greed as a flaw. You gotta swim in the dark, there’s no shame in drifting, feel the tide shifting away from the spark. You gotta swim, don’t let yourself sink – you’ll find the horizon, please believe me – I promise you it’s not as far away as you think.
The current’s will always try and drag you away from your love- just keep your head above the water and swim.
Art is part of my being. It’s what makes me tick. It’s what makes me feel truly happy. But I also know I can’t let inequalities, and issues that exist that I know can be fixed – happen without any input.
So even though I had forgotten 80% of my art life. I’m going to put it down to trauma. I don’t necessarily think people are born as artists, but they certainly die as artists. I’m always going to be an artist – even if I lose my footing a bit. And I look forward to building more goals to combine art and suffering into better change.
Tomorrow is my birthday. I’m getting old. I found my 10th grey hair today (yes I’m counting) But I’m still here. I’m still alive. And it amazes me. But there’s a lot I don’t know. And there’s a lot I’m still learning. I’ll be Nickel on the periodic table. Nickel is a silvery white metal that takes on a high polish. It is hard, malleable, ductile, somewhat ferromagnetic, and a fair conductor of heat and electricity. Ni-64 is used for the production of Cu-64 which is used in radioimmunotherapy. Ni-61 can be used for the production of the PET radioisotope Cu-61. Which puts me in good company.
But turning a different number has less significance than having your first child or losing a family member. Those are real Life milestones.
When I was younger, I was worried I was going to be behind. I was always in hurry to do everything. Most people get a foundation degree before art school. I managed to convince art schools I didn’t need one. Then I mixed my masters with my undergraduate degree & completed them at the same time – it made me one of the youngest people in the UK with an art BA & MA at the time (First class, too). I went to summer camp as soon as I was allowed to apply for a J1 work visa. I went to NYC as soon as I was allowed to rent a hotel room alone (and worked 2 jobs to pay for it). Now I’m so behind my peers. And I want to slow down time. I sometimes wish maybe I should have taken my time & not rushed things. Smelled the roses, as they say. But There’s never enough time. And now I’m in a place where I feel like I’m living on extra time I wasn’t expecting — which is pretty sweet.
When I look at my photos of 2015 I think of the juxtaposition of beautiful scenery with private pain. Emerging from this exacting year, I am grateful (but still pissed off & frustrated with having pain) for the suffering because of how much it has taught me – and continues to do so, and how it made me even more compassionate to others. The kind of tumult I’m in is both a physical and an internal one, and it doesn’t detract from my gratitude that I am able to live a life involving new places, meet new people, laugh with friends, care for people in need, learn new stuff, see delightful sights and eat beautiful meals (most of which are cooked by my mom). It’s taught me that it’s always possible to find wonder in the world despite things being tough, because the world is full of wonderful things and people. These fleeting moments of awe, strung together with acts of kindness, kept me afloat.
I can’t help but feel severely indebted to everyone who’s helped me along my journey, especially in my search for a resolution. For all those people who ‘took a chance’ on me. For everyone who has replied to my late emails or who’ve reached out to me. For all my friends who’ve been right beside me, whether it be when I’m having a good time or when I’m tucked into my bed, drenched in my own cold sweat .
Who knows what 2016 will bring, but as my last day as 27 winds to a close I have learnt more, dug deeper, and thinking of my next year ahead. I want to take the an opportunity to redefine many things as well as to recapture certain values and certain things that are potentially important for me and for people in general…The importance of giving back is starting to be theme for me. I want to be generous to the people who have helped me out. I want to make sure not to ‘ghost’ on people either. In order to be credible, you must be authentic and true. I’m starting to write my proposal for my PhD in creative practices as a means of moving health research evidence and interventions into everyday practice. I’ve already applied for 2 of my first radiotherapy posts (probs. won’t get interview, like). Moderation in everything. Don’t be an asshole and don’t be a pushover. Change is the only constant in Life. It moves forward regardless of how hard you resist. Be kind. Be empathetic. Take care of your parents. Cultivate relationships with those that matter, those that genuinely care about you. Embrace them with your whole heart.
My birthday’s tomorrow, but help me celebrate since I’ll be spending the whole weekend revising. Donate time/things/currency to Yorkshire Cancer Research , Doncaster Cancer Detection Trust and/or another cause that’s close to your heart! Feeling blessed and lucky to have such great friends and family.
As for Birthday plans after my exam on Monday: Heading straight to laser quest, drinks, movies & some good ol’ pho in Sheffield. It’s going to be a birthday week.
2015: thanks for giving me what I needed and teaching me what I didn’t understand. You were challenging & profound.