We’re often led to believe that only a very small percentage of people get after-effects from viruses and the like. Such conditions like Chronic Fatigue Syndrome, ME, & the triggering of other issues such as IBS or Migraines. Mono can cause post-viral fatigue which is probably the virus that has it’s after effect struggles more documented than others. it is also a trigger of Lymphoma in some cases. Many of these conditions and symptoms are caused by having a normal virus. Something happens, and the body goes into some sort of overdrive.
I don’t know the exact medical science — but it happens. Many of you on here will have actually experienced this — some of you the affects will have been for a few unexplainable weeks – some of you for months, even years… even life!
But it happens a lot more than we think, it’s just because medical healthcare have gas-lit us because they don’t know why it happens yet. Or why it happens to some, and not others. Or haven’t truly investigated it. Or because it can’t be captured by standard bio-medical blood tests. And as such, it leaves a lot of the population struggling with these “medically unexplained symptoms”. With no help. Feeling unheard. and truamatized by a system that won’t acknowledge the symptoms as real – and have to go through life as if everything is normal because there is no explanation why the symptoms of flu (or whatever virus) have continued months later.
Not only do you feel like you’re letting yourself down, but you feel like you’re letting everyone else around you – your team, your friends – who all deserve better – down. BUT this isn’t true. It’s just capitalism that makes us feel like this. And capitalism makes us judge others who are struggling with these artefacts of viral reactions on our cells – because we’ve been brought up with a limited language, and understanding, of illness as an experience, and its effects on the quality of life and experience of it in the body outside of biomedical metrics.
We see the after-effects of disease covered a lot more in cancer care. But that’s only because the treatments we use can cause all sorts of lasting issues and conditions. Despite us knowing that those treatments are harsh upon the body – we still don’t pay attention to it properly. Post-cancer (Tx) fatigue ? We get told, or say it’s normal. But we don’t know why, really — when it lasts many many months post-treatment and remission. Even for life.
One of the reasons why we don’t talk about illness is because we can’t ever truly think that it will happen to us, or that we will be able to handle it better than another person. Once you are long-term ill, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination.
When you get sick – and it’s lasting effects leads way past the understanding of the disease, or past the immedate life-threatening part — Something happens to our temporal existence. Our futures fold in on themselves. It has certainly exposed itself to me, contrary to both the laws of nature and of human nature. We are not meant to be able to see into our future. We are propelled into our future, thrown into our projects with no premonition, no peeking. Our life stories are meant to unravel as we go along, at a rate of one second per second. No slower, and certainly no faster. but living in illness uncertainty gives you a glimpse of this – and it seems that people who have never been uncumbered with this kind of uncertainity, unknowing in their own body and the world around them can’t extend to understand it.
As such, the way we deal with – specifically – long term illness/feelings of sickness/dealing with chronic conditions – all reek of misunderstanding and lack of patience.
Illness changes everything. It changes not only internal organs, but our relationships to the body… my relationship to others, their relation to me, to my body…
In short, illness changes how one is in the world. Moreover, the world of the ill person changes; it transforms into a different landscape, filled with obstacles. Distances increase. It becomes uncanny. The world of the sick belongs to a different universe from that of the healthy, and the interaction between them is clunky, difficult, abrasive.
This Guardian article is written by a man, a professor of infectious diseases, so he is even more confused by this lagging – this viral aftermath of symptoms post COVID-19 on himself. He can’t rely upon his body – he doesn’t know what these flare ups are or mean — his body, once trusted – is tripping him up.
As I’ve said before, post-viral symptoms are not that unusual — but we’ve treated illness, and the unknown in medicine so poorly – that he is confused too. A man who understands the body in detail feels that his experience with illness without disease present – is confusing. And that’s how many of us have been feeling for years and year — especially women who are much more likely to be treated as being hysterical or somatic than their male counterpartners within healthcare.
Perhaps one of very limited sliver linings of having an novel virus wipe across a massive population of people is that we might begin to be able to collect enough data that can help us with understanding the after-effects of illness on our body. And what it means to live with symptoms whilst no bio-medically diagnosable thing such as having an active disease present & how this can make the experience of healthcare – and societally – more empathetic and compassionate.
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.
I’ve been following the progress of C-19 for a long time. Since around Jan 20th. I was in Japan, walking through a market in Tokyo & my American friend was messaging me how I might get quarantined on my way home. LOL I said to Hayley showing her the messages. “Americans, they’re so OTT. If it was a big thing, we’d have seen/heard it whilst here wouldn’t we?”
So we left Japan, & we weren’t checked out nor quarantined. Nothing was different. But I wish we had been. All of us coming home from Asia, 2 weeks at home & anyone we’d have contact with also kept at home. To keep it in check. Instead, here we are. On lockdown of sorts. Cinemas, cafes, pubs, restaurants, universities, and schools closed. Now, I believe this is the best thing and should have happened about a week ago given the rate of deaths we’re at (177 at the time of writing) and infection numbers of only testing hospitalized patients.
I’ve been self-isolating since last Thursday. Since before the government announcement of attempting to work from home if possible on Tuesday. I’ve been watching other countries and I know where this is going. I’m a person who is at risk. I have super bad asthma, and a bunch of other long-standing issues – that’s well documented on the pages here. So it’s been a week of only walking the dogs alone outside. Everything else in my bedroom and on Skype.
Now I’ve been working from home most of my adult freelance life. At least 2 days a week. So I should be used to it. But I will level with y’all, I have found this week really, really hard. By Wednesday I wondered why I was struggling given the fact that this was my normal activity last year.
The girl who lost most of 2012 and beginning of 2013 to insane fatigue and pain and spent around 8 months laid in bed most of the time, & when she wasn’t would just dream of being back in the bed – is now feeling trapped and uncomfortable in the same space.
I usually love working from home. No horrible Northern Rail commute, the money I save, a relaxed ease into the day. But this week? I can’t concentrate. I feel restless. Every day I have to reassure my nan that if she takes the precautions necessary, she should be ok. And then I go back to my laptop and I stare down twitter with it’s 9 in 10 tweets about c-19. endless scrolling.
Tonight, whilst re-reading some texts for my PHD, i realized why I feel so uncomfortable being self-isolated.
It reminds me of being sick. And I am struck by the comparisons of the life people with chronic health conditions, disabilities and complex lives live every day.
I am not sick (not in the Corona way anyways) At the time of writing – i’ve been feeling the best i’ve felt in many many years recently. But I realize this lock-down, isolated life mirrors illness/injury in the same way that it affects our ability to be in the world.
Without real life interaction, even if it’s just me writing a bunch of bullshit on my laptop in Starbucks surrounded by strangers, it still feels like BEING in the world. I need some rhythm and rime, the beat of the street, i kinda need that Northern Rail community feeling to feel grounded. It gives my work the context it needs to feel tangible and real, otherwise — they’re just words on a page, drawings of things. Heidegger writes about this well in Being in Time. For him it makes no sense to abstract a paintbrush from the lifeworld of the human being in order to show that it’s mere an object made of molecules. The brush ceases to exist as brush if there is no human-being to use it.
In other words, meaning and interpretation of our everyday ways of being in the world – underline and anker who we think we are and what we do.
Today we had a Skype with our newish Lab4Living Professor, Peter Llyod Jones, talking through his amazing catalog of varied work, underpinned by his scientific background but his understanding and need of combing art & design & all the other creative fields such as architecture and fashion to bring about the best most holistic and important/innovative works. He asked, “What does it mean to combine both science and art/design together and be a collaborator of both?”
The answer, of course, is simple: Science can in many ways explain *what* we are, but it cannot explain *who* we are and *why* we are. We recognise beauty when we see it, we know when we feel pain and experience betrayal or joy. We don’t need technical explanations of these things in order to understand them or believe they exist.
The ubiquity of science’s usual calculative thinking can help give us a sense of freedom, and power of a ‘neutrality’ and it’s a sense of Truth. Presenting itself as the best, most sound, way of understanding ourselves and the world (it doesn’t). So in theory, me being at home – hoping not to catch (or have previous caught & yet to get symptoms) c-19 – should give me a sense of agency in this. But bringing it back to that mirroring of chronic illness life, it does not.
When I was properly, pretty bed-bound sick – i learned fast what tending to the biological body does in medicine, it obscures what it means to *live* in that body, and what it *feels* like to be ill or injured, what it is like to experience the world differently – as ones embodiment shifts and changes.
As Jeffrey Bishop noted, Human life can not be reduced to mere functionality, without doing violence to the other features of being-in-the-world. When you take away these contexts, or the ability to interact with it – it is a harm, a different kind of suffering.
We take for granted our interrelation of being-in-the-world, and when it beings to breakdown – we feel like we’re falling out of our normal life. our of the world.
Whilst C-19 rages on, I made well aware of my “unstable body” – this self-isolation for longer, more necessity, is just another sudden intrusion of the body into the everyday experiences. I’ve tried to explain in many different posts on this blog over the years about what it’s like to live in a body that keeps on changing? it can be frightening, sometimes even terrifying and always confusing. it generates this wild attention to your body that you never had before you was sick. One becomes a prisoner to any perceptible change — a cough, a lump, a pain. Predictability ends. You just grieve about the loss of it, allll of the time. Get forced to admit “new normals” when you just want the old normal.
C-19 is an equalizer in that it is forcing us to look and feel at our bodies and disruption of being in the world in the same way that illness & injury & other events do to others.
We have fallen out of the world, and most of you have now joined me in what Susan sONTAG FAMOUSLY CALLED “THE Kingdom of the sick”. But a lot of you aren’t sick. you have to live a version of the sick kingdom life in order to either not kill other vulnerable people or not get sick yourself. Your way to project yourself into the world is disrupted.
And that’s what I am feeling. This wild uncomfortableness. Or kind of not belonging. An – what Heidegger called an “unhomelike being-in-the-world”. – the way we understand the world into which we know is thrown out. Our world is no longer homelike, relatively stable. because illness (c-19 processeS) has disturbed our meaning making processes – it’s not just our body but the way in which we gain our being from/.
Having experienced serious illness – it leaves no part of your life untouched. Your relationships, your work, your sense of who you are and who you want to become, your future, your sense of life – and all these things change and it’s terrifying.
This creates a suffering. The complex and profound suffering that is basic to the human condition – whether physical, mental, emotional, spiritual or otherwise – so something very few of us are willing to confront… fully. It’s 1 of the reason why a lot of people have difficulty acknowledging friends are super sick, or people who are disabled continue to suffer great inequalities and injustices – because people can’t face their disruption because it means facing that it could also be them. most of us would prefer not to dwell on the unpredictability of illness and death or the vulnerability of the human mind and body.
I feel like those who continue to keep going out, drinking in pubs having mass gatherings etc are turning away because they can’t deal with the idea of the suffering. They also don’t want to give up, momentarily, this ‘freedom’ that helps to give their world meaning and being. They also don’t want to experience what it’s like for so many people who are housebound due to social isolation, illness, and beyond.
And for me, here I am. In my bedroom. Not feeling real, not in the world. As noted many years ago, & multiple times on this blog – I have felt like I’m not going to make it to 35 (it was 30, but I got there). This feeling has been with me way before I got sick. Like with my poor background, it’s just a given. Now I am feeling it more than ever. But with the long sickness, and now this – I have finally realized why the idea of dying without leaving a mark really bothers me. And why c-19 really frightens people.
When we can no longer project ourselves into our futures, we come face-to-face with ourselves – that our connection with the world is finite. What we’re really afraid of – is not so much the biological malfunctioning (tho that is scary) but the possibility of no longer to be able to *be* at all.
This kind of living takes away the privledges and luxuries of being to project secure and idealistic futures. It reveals the precariousness of our existences.
When I was so sick and couldn’t leave the house, it was fine because I had 0 energy. Now I’m finally getting my life back to a small part of what it was – and i’ve been thrown back into the life that sooooo many people have to live in, day-in & day-out. Without the imminent threat of C-19.
I see myself as an empathetic person, and i thought I had understood what it means to not be able to do stuff due to illness, to have your world broken and your place within questioned. But I finally think I get why it’s *so* dangerous for the elderly and the most vulnerable – who are relatively bodily healthy – to be isolated and lonely from people, community, connection and activity. Because it breaks their being-in-the-world, it makes it difficult to ground yourself, and it feels very much unhomelikeness, within your own home.
I hope when we get to the end of this moment, that we will all reconsider how people are living and bring news way into helping connect people whose lives are already c-19 lockdown like.
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!
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.
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.
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!
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.
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.
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.
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.”
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).
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.
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.
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.
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.
The false scarcity is this: we believe that shutting out others, keeping them out of our orbit, our country, our competitive space—that this somehow makes things more easier for us.
But today, value isn’t created by filling a slot, it’s created by connection. By the combinations created by people. By the magic that comes from diversity of opinion, background and motivation. Connection leads to ideas, to solutions, to breakthroughs.
The false scarcity stated as, “I don’t have enough, you can’t have any,” is more truthfully, “together, we can create something better.”
And going forwards in setting the tone to my next decade is just that. To 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!
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?
My productivity clock is weird. I can’t do anything of great magnitude in the morning. In the mornings I can’t write good essays, I find it hard to read and interpret big data-sets or new complex ideas and theories, I can’t really code websites, I find it hard to hold a proper conversation for at least an 1.5 hours after I’ve gotten up. So I leave my admin tasks to the morning and I usually distract myself on twitter. I’ll attempt my work, but will probably have to re-write it later.
By the afternoon, I feel my cogs working more smoothly. I can read those research papers and books with the understanding they need and deserve, I can begin to stare at the word document with that paper I’m writing. I can draw much better – and can debate things until the cows come home.
By 5-8pm I hit another fatigue lull, but if I nap on the train home or on my sofa in the living-room, I wake up raring to go.
From 9pm – 2:30am these are my golden hours of productivity. I write everything I need to do, I notice ideas and complex issues I missed in papers during the day, I draw more in that time than I have done all day. I complete works, I come up with my bestest ideas – I learn so much new stuff in this time — I learnt how to code websites and phone apps deep in the night. I’ve started many of my projects at this time.
But it’s annoying. I want to be that well productive in the day – and ALL day.
It’s pretty exhausting at times, especially already trying to beat that fatigue that won’t shake off.
And I know I have so much to do. So how do I keep motivated as I do my PhD and all my other projects?
Over the winter holiday I read “Let My People Go Surfing” — Chouinard’s story is of his values and what led him to start Patagonia (the best outdoors store, ever). The principles that drive his company are really his own and he is a reluctant businessman. His big focus is on quality, durability and doing more with less. He is a committed environmentalist and believes businesses should be responsible for the damage they do to the Earth. Refreshing.
Quotes I liked: “Doing risk sport had taught me another important lesson: never exceed your limits. You push the envelope and you live for those moments when you’re right on the edge, but you don’t go over. You have to be true to yourself; you have to know your strengths and limitations and live within your means.”
“How you climb a mountain is more important than reaching the top.”
Before 2012, I worked so hard and made so many sacrifices, that when I thought it was all nearly over – I regretted the missing the really important things in my life. These quotes encapsulates some of the foundational lessons I learnt – or certainly felt – when I got sick, and my normal life was really hard to maintain for months and months. It drove me into the ground.
But surviving something like that, made me feel like I deserved to spend every day on vacation. But you can’t. You have to re-join the real world, and re establish yourself in some sort of way.
Now I need to be able to have a balance during this PhD. I’m finding it a bit hard. Some weeks I work insanely hard. Some weeks, I feel the guilt for not having achieved much. Maybe that’s a natural balance? But I think I’d prefer it to be more work consistent.
So in changing habits, and in hoping to sculpt something from my mess, and learning from Let My People Go Surfing values. I’m not going to spend any money on clothes, & unnecessary things like blankets and lights (which I seem to have a thing for!) I will only buy essentials such as food, and art/study stuff and train tickets – for a whole 6 MONTHS. Starting from tomorrow. This will help enable me to declutter my day, my procastination of online shopping when bored, from walking to shops and looking at stuff i don’t need. I want to begin to re-evaluate what I have.
And I need to write more.
I’ve journaled frequently in the 10 years. I kept a streak doing it for 106 days in a row over last summer. Every single day I’d write, I’m glad I did. And yet, most days, I don’t.
And I almost never let anyone see my writing.
Multiple theorists emphasize the importance of failure. I know this, but I’m not practicing it.
In the past year, I labored over at least a dozen items I planned to post publicly. I published only 1 or 2 good ones.
I sat down with Steven Pressfield’s The War of Art, and it drove the point home even more strongly:
Whatever work you fear most, it’s likely the most important for you to be doing.
I fear writing because I fear I have nothing to say. I fear letting you see my half-finished thoughts because I fear losing your respect and attention. Most of all, I fear wasting your time.
But I know it’ll sharpen my thinking; I know it will push me. I hope it will connect me with people who like to think about, talk about, or work on the things I’m interested in.
So I’ll do it.
I will, at least once every week or 2, post something (brief!) that’s unfinished, unready, and unworthy of your time.
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.