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.
When we look across the world, we see a scenario that I don’t think we ever really thought we’d see. The world is shutting its doors to keep out an enemy it cannot see, smell or hear.
Now, some of us have waited our whole lives for state sanctioned introversion. One of my favourite books is the “Shy Radicals”. Yes please thankyouverymuch. But now that the option to come out of ourselves has been removed it doesn’t feel good. It doesn’t feel very good at all. Perhaps we have more in common with those folk who move through the world as if it were an amusement park. We’re just not very good at parties. But now there aren’t any parties to go to anyway.
And suddenly, I dunno about you, but I could do with a legendary house party, 1 of those ones you end up talking about for life.
None of us have any real idea of what is about to unfold, or how long this unfolding will take. Some of us are living week to week, pay cheque to pay cheque. We may be working from home, but only for as long as the companies we work for can keep going. We may run businesses that are trickling away before our very eyes. Some of us may have seen our (very small) savings – everything all those years of slog and sacrifice were meant to be worth it for – slip like sand through an hour glass in just a fortnight. Some of us may be ok. But if we don’t know what it is to come, how can we know for sure?
Here’s the thing about all of this. It’s a WE thing. Because for once in human history, every single one of us is affected and we are all in this together. And not in the way Conservative party says.
Not a single one of us can come away untouched from this – not even the millionaires and billionaires and government officials and beyond.
We are humans. We do some shitty things, but we also do some amazing things like: people continuing to be there on the frontlines to keep things moving as they should, and saving peoples lives. also we make some amazing art & music & scientific amazingness, and figured out that as well as making some excellent cheeses, mould can make life saving drugs. We also like to dress our pets up in clothes.
Right now, as I see it, we can only control ourselves. Everything else is out of our jurisdiction – but isn’t it always that way, much as we like to convince ourselves otherwise? So with that in mind, we have to sit this out. Take care of ourselves and each other as best we can. Eat well. Brush our teeth. Get some rest. Watch the bare minimum of news. Concentrate on only each day as it comes. Add gin where necessary.
Do what we can.
Those of you who can do basic lonely exploration – some how without much close physical contact- can you check in on neighbours and old folks and those who are super vulnerable? People are frightened, and rightly so – but as Mr Roger’s – the dude my friend Colleen told me a lot about last summer – those who are uncertain – look for helpers, & those who aren’t *as* vulnerable & understands fully what’s going on or has something that is of use to other: BE the helper.
These are the moments that frame and create who we are, and how we will be looked back upon in history – And I want us to be collectively responsible (staying in, not doing anyyyy unnecessary socializing etc etc ) and being compassionate (understanding that if you go out in a massive group – you’re putting loads of people at risk/ understanding people are frightened and figuring out how to help others).
Suffering together, but together in kindness and support (at good distances, off)
In the meantime, let’s keep each other company (online and in fun creative different ways).
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.
It’s the annual Smizz Christmas card!! I couldn’t decide which one to share, so I’m sharing them as a collection.
As we celebrate the holidays, and enter into a new year – let’s remind ourselves that love is trust, empathy, humanity, mutual aid, and care. A society built on such love is a strong society—probably the strongest of all possible societies.
I drew Doncaster and used it as my christmas card this year to raise some money for the floods. I was moved by the usual hardships my immediate community have had to endure – from effects of climate change & things beyond this – in particular, Tory cuts. BUT I saw my community come together. People opened up their homes for others, people came together and did art auctions – dedicating their time and work and labour. Volunteers ran emergency shelters & food for all. Members across Doncaster Council, Ed Miliband, Red Cross & beyond worked tirelessly and around the clock making sure people & their homes were ok. And that the rest of us could try & get back to normality too – like roads being cleared from flood water and beyond. So I also ran 10k & sold some prints of these drawings (minus the snow added) – you can still get one! (A4 & A3)
For the rest of the season, I will be donating to Crisis to help fund accommodation for people who are homeless this winter season. Did you know that in Doncaster we have the highest rate of homelessness in the whole of Yorkshire? (This is because of Tory cuts & changes to benefit systems & them cutting all local councils money by around 40% before councils have to sell local assets such as football pitches to get some more funding)
I am also donating to Open Arms, which is a non-governmental organization whose save all the people who are mighty desperate to try & reach Europe by fleeing horrible conditions of war, persecution or poverty.
We (the people in the UK) often fetishise the means of making people’s lives good and fulfilling, while ignoring the fundamental entitlement to those good and fulfilling lives. Like, we talk about train fares and renationalisation, not how amazing it would be to travel cheaply and efficiently.
We talk mostly about what people should settle for, not what they have every right to expect. One reason the UK has drifted heavily into inequality is cuz we have accepted the idea that having a decent life is provisional. And it truly is not. And this is something i am focusing on this holiday season. Making people feel seen and heard.
As y’all know, I am a bit extra when it comes to the festive season. And it stems from the winter of 2012, when I was really, really sick.
All of the money I earnt from my job at waterstones that festive season, in between hospital appointments, literally went on buying people gifts – like I wanted that Christmas to *really* count because I wasn’t sure if I was going to have many more. These were literally my thoughts.
It was when I realized that I took a lot of things in my life for granted, and getting to enjoy and be with friends and family over the holiday periods was one of them. I felt a bit ashamed of this taking and not giving that I had done so much in my life, and not acknowledging the things in my life to be grateful for. After all, we were extremely lucky considering.
In this new light, I reverted back to my younger Christmas excitement. Keen to make that Christmas an awesome one – and i continue this legacy on. i NEVER want to take any of my privledges — this life for granted. And I don’t want to witness the suffering – a lot which is unnecessary due to a lot of gov policy & culturally – without trying to help.
I love how the narratives surrounding christmas – in our movies & shows & music – are about second chances, redemption, hope, a time to make up for a time you wasn’t very nice. And it’s the reason why I get so excited for Christmas! It’s a time where people try to be better versions of themselves – even if it’s just for the holidays – and they try to right their wrongs, and they think of others more than we usually do normally. And suddenly we make more effort to go out together, and all of these things added together really makes a dull season do-able. It brightens up a bad year or makes the year ahead seem less daunting.
And just like watching these endless xmas movies that my mom and I do every year now, it’s not ever about the gifts at all, but about spending time or getting in touch with those who matter. About sharing if you have enough.
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 help, share, collaborate and support. To be compassionate and empathetic. To taking chances, and allowing second chances. Believing in our potential – not what people *think* we are capable of. 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!
Happy SMIZZmas friends, whatever holiday you celebrate – and where ever you are. You’ve made this year incredible and I am moved by all of your generosity of kindness & spirit & support.
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!)
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?
“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.
I am hoping for 2016 to be a year where we open the doors wider and take care of each another
Susan Sontag wrote in her “Illness as metaphor” (1978) essay ,
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. “
I’ve found myself asking myself, “Smizz, how do you get from here to there? ” I’ve spent the last few years trying to find my way back to the kingdom of the well. 2015 was all about screwing up maps, getting really, really lost. Like I’ve been using Bing maps instead of google maps. I feel like my good-healthy passport needs renewing.
I get good days, even weeks, only to be knocked down by by more complications, more intense symptoms. Life wasn’t going my way, but that’s something I’ve been learning to get used to and it happens to us all. I definitely cope better now, but what I can’t get used to is the feeling of being broken.
And what’s scary is that most of this is happening to us all, in some shape or form: depression, low-self-esteem, a loved one being sick, unemployment, abuse, bullying, war. ect. At some point, we all loose our footing. And in the wake of trauma, sure footing can be hard to find.
When all this started, and I thought I was going to loose my life, I was full of regret.
I had a good life – But why did I spend so much time on Facebook ? There was so much more I wanted to do, places I was worried I was never going to see. I always wanted to have a border collie puppy. I always wanted to own an american fridge with an ice maker (not sure why, I don’t even like ice in my drinks). But here i was thinking I’d never have any of that. And what about my artwork, my art-life? I had dedicated nearly 7 years of my life to what I was doing. And I had left it behind, without saying a word to most people except close friends.
I wrote a will. I settled my affairs – they told me to. And i was terrified because I’m an artist – and i was seeing a future where if I go blind, I might not get to do my work anymore.
But I’m alive. I’m alive! And I’ve learnt that there’s a big difference between surviving and living.
So in 2013, I was slumped over with fatigue. I barely got out of bed. But what I do realized then was that I couldn’t just keep living my same oldlife anymore because it just didn’t fit anymore. The stakes had changed. My life view was flipped. All that stuff i thought was important, turned out not to be that important.
In 5 months time, I HOPEFULLY will be a qualified radiotherapist. I’ve spent the past 2 years being pulled through my course by my amazing friends and family whilst managing horrible, horrible side-effects/symptoms?. I will be qualified to deliver radiotherapy treatments, create treatment plans, innovate and care for my patients and their carers going through the cancer pathway. And I’m super excited and shit-scared. I took on this course for a number of reasons: One was to help me cope & have some understanding of the human body, and genetics and control, 2 was to give back to the NHS and to emulate the great care I was given & to irradicate the poor care I saw too. But ultimately it was to help make the difference I want to see, to make the pathway better for others. To enhance and help empower patients and their carers narratives. Because if there’s one thing I’ve learnt is when you’re sick – you feel vulnerable and voiceless.
If you asked me 5 years ago if I saw myself here – the answer would have been – what’s radiotherapy? And errr nO?! If you asked me at the beginning of my course if I would be in 3rd year now, I wouldn’t have been so sure. But now here i am, trying to adapt healthcare research with creative methodologies.
l’ve experienced chronic pain and fatigue. I realized how debilitating it can be, and how rarely we take the time to understand it in others. But this lesson is still being learnt. The experience is humbling and, more than anything, made me much more aware of – and empathetic to – the hurt that we ignore.
This, in particular, is my motivation going into 2016. My resolution (although I hate the word “resolution”; it sounds flimsy and self-obsessed) is to take more time recognizing the pain in others and offering solace whenever possible. I aim to keep the dialogue open with all of you, whether online or in-person. I want us to be open, and warm, even in the face of the unknown. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it – and one person CAN change the world.
2016 maybe full of joy for you. It maybe full of challenges. It’ll probably be full of both. However it all plays out, remember that we have each other. Don’t wait to be asked for help; you’re already being beckoned.
I started 2015 feeling lost in transition, the pain was really, really grinding me down. I cried like twice on clinical placement because I felt behind & that I’ve got a lot to loose, I gave up my art life. There’s no roadmap to picking up the pieces of a broken life. So I’ve been drawing my own roadmap, and somewhere along the way, I’ve started to feel like I’m living again with the help of all of YOU – my friends. I’ve visited 5 new countries this year. I chased the Northern Lights with my friends, we rode under Niagra Falls, we drank thrugh the worst icelandic storm of 30 years. And as I have watched the ocean many times this year, it reminded that the suns set, but it will rise again and everything keeps moving. But we don’t get forever. And that’s ok. We just have to make sure the stuff that counts, really fucking counts.
I hope that 2016 will hopefully bring me some more closure, and I’m hoping for less headahce, much less fatigue, more adventures, taking more photographs, seeing friends, better email action, laughter, fun, love and hope. And finishing & passing my degree without a nervous breakdown (lol) . And hopefully a job offer, if I’m lucky. You never know what the road has planned though.
Happy New Year friends,
With so much gratitude for you for getting me here
Unconditional love, lets make the world a better place in 2016!
The Tory government believe that Nursing students (And I’m sure it will then lead onto other allied health care professional courses such as Radiotherapy, radiography, physiotherapy, ect) don’t need a NHS Bursary to help them fund their course and cost of living.
And they’re so wrong believing this. It’s just another way to repress the NHS as we know it. And it’s bad for these reasons.
Firstly, I would never – EVER – have had the opportunity to go to university if I got no maintenance grant (for a normal – fine art course). I entered university in the first year that tuition “top-up” fees came into play. Now, I had no sense of money so the debt didn’t really worry me too much. And I still don’t have any money. But I came from a family that had NO money too. I was brought up below the poverty line. No one in my family has any qualifications. There were about 12 out of my 6th form (of 250+ students) who went onto university in the area i’m from. Are you sensing all this lower-social-economic working class, less privileged stuff here?
My mom jumps from minimum wage temp job to temp job. Ruining credit scores after credit scores – but we get by. Thanks to door-step loans and borrowing from my nan – back and forth.
When I went to university the first time – I kept a bunch of part time jobs, I had the summer to earn more money. I would wire my mom extra money to help her out too. I didn’t get ANY help. I worked in the USA on unpaid internships because I worked in the bookies in my spare time. I left university 4 years later with a debt of around £23,000. That was my tuition fees & living loan. I had also got a maintenance grant and a university bursary. And I can’t believe ‘normal degree students’ won’t get that in the future now either. I didn’t party too much, but I had to go to London a lot as part of my course and art materials and an art degree show is expensive to put on. But I made ends meet and I don’t ever remembering feeling like I was truely money screwed. But I lived in my overdraft. I didn’t care. It was free.
Fast forward to right now.
I’m in my last year of my 3 year Radiotherapy & Oncology degree. And I CONSTANTLY feel like I don’t have enough money to survive.
I’m doing this degree because after a horrific health experience I wanted to both give back to the NHS that has saved my life, and given me so much in compassion and help. It rocked my world-view. Falling sick changed who I was as a person and my old life just didn’t fit in the way it did before. But it was also really important to me to enhance patient care further, to get rid of those moments of care where I felt misunderstood as a patient and not really listened to. Sometimes we all just need to be listened to, even if there’s nothing you can do about the issue at hand. And there’s so many systems and pathways that can be made so much better.
And so, I thought that the NHS could do with someone like me, someone who had already done work with patient experience, who can empathize what my patients are experiencing, who thrives on doing a great job and helping people, making things, and whose passion for social justice and a better society motivates everything I do.
But falling ill had made me even more strapped for cash. I couldn’t get out of bed, I couldn’t do my freelance job. I lost work, I lost hope. For a whole year. When I decided that studying radiotherapy would also be good for me as a coping mechanism and as a routine to get me back to functioning in the real world – to make me feel a bit human again and to understand the system that I loved and hated – i knew because my course was funded by the NHS I could ‘afford’ to do it. This was a hoop that wasn’t going to hinder me. I wasn’t discriminated against because I didn’t come from money. If that bursary wasn’t there. I wouldn’t have been able to afford to do it.
But here’s the thing. The NHS Bursary barely covers living costs anyways. And they want to chop it?
Being a healthcare student isn’t like being a ‘normal course’ student. On my art course, we started late September, had a few essays, researched a lot, constantly worked (though this wasn’t logged) in the studio (realtively stress free) and you’d have a few assessments and shows along the way. You made it what it needed to be. As time consuming or dedicated as you wanted. We’d have a nice christmas break, and a nice Easter break. No exams. We’d break up for the whole summer around May time. And the cycle would happen again. I could work weekends if i wanted to because i did all my work during the week. I could work evenings because – well – i could go and work in the studio whenever it suited me. I had 4 months of potential time to save up from a part-time job and/or get extra experience in my area.
A healthcare course is much, much, much more and very different. We work 35+ hours a week on clinical practice. Helping patients, cleaning and setting up equipment, cleaning up patients, letting them cry on you. You, as students, do carry quite a bit of the work – that keeps the NHS moving. But you’re being watched, constantly. You have this constant feeling of stress because you know you need something clinical ticked off, or you need to do more case reports, or case discussions/clinical examinations, you’re constantly being stretched and observed and building your professional knowledge, confidence and persona. And it’s not like the art studio, if I mess up – i can’t just come back to it, it’s someone’s life it’s affecting. Add 1-2 hours of commuting to work each way. And then time for cooking tea and tomorrows lunch. Then add on ALL of the academic work that you need to do that night and get up and go to work the next day again.
You have ePortfolio, exams, assignments after assignments, clinical competencies, IPE, dissertation, more exams. And you work ALL summer too. No Camp America for you. This is all on top of 35+ hours. But guess what, if you was doing a business degree, or a marketing or computer science degree with a work placement – You’d be paid for your work placement. What about us?
What about this Bursary?
Unlike normal degree students – healthcare students get sent across the region and the country for their clinical practice. They can be in Doncaster one placement and then in Sheffield the other. On my course people can be placed as far as Newcastle and Leister. Commuting from your house in Sheffield to Newcastle is probably going to be a no go. So guess what, you have to pay for 2 rents – often UP FRONT – out of your own money. But get this. That NHS Bursary barely covers your Sheffield rent anyways. Where are you going to get this extra cash from? How are you going to eat? How can you afford the bus to work? Sometimes it’s just cheaper to rent a place then it is to actually take public transport (which is pretty horrific) If like me, you’re just a poor kid from the Donx, whose mom can barely pay her own rent anyways, where do you get this extra money from? What happens if you’re a parent? What do you do then?
Then lets consider all this academic work on top of your clinical placement rota. Each 20 credit module equals 200 hours of study or teaching. Since you’re on clinical practice, that 200 hours is your own study time. But you’ve already worked 8 hours that day, you get home around 6-ish if you’re lucky. You need to do that work. What employer is going to be that understanding of your dodgy work pattern? And you’re probably going to be REALLY tired after finishing a whole day of clinical placement ontop a whole shift at Boots, then go home and try to do some ePortfolio and do this ALL again. And people DO IT. That’s not the debate. But could you do it if that bursary wasn’t there at all? i don’t think so.
When you get a NHS bursary (which FYI is at the most around £380 a month) you don’t get any extra help from the university like you do on a ‘normal course’. You’re exempt from quite a few hardship funds in place within the university. And student loans will only lend you up to £2,200 a year – max. You have to work clinical placement all summer remember too.
Then lets consider all these extra costs which you won’t think about.
Your uniform has to be clean on each day. That’s 5 days of washing straight up. It’s white – that’s an extra load of washing. If you’re living in student accommodation – your washing is going to run you around 5-10 extra pound a week. You’re working all week, and there’s something about clinical placement which makes you WAY more hungrier than in real life. And hospital canteen food is ridiculously expensive – so you have to plan ahead and pay extra in your food shopping to run the costs of a decent packed lunch to get you through the working day. There’s all the extra things too. You want to be ahead of the game for ePortfolio and job hunting – you need to go to conferences – often way expensive – even for students. But that’s part of your professional conduct and identity. Then you have your normal course costs. Really expensive course text books.
Then if you’ve survived all of this, and get to the end of the course and want to get a job. You have to pay for a licence to practice and a membership to your college of your profession to ensure you have insurance – before you’ve even got a job, a pay-check. This is around £380 before you’ve even started. I have no idea at this point where my money will come from to pay for that. We’ll see.
I’m lucky because I’m poor I get the full bursary. Others aren’t but their parents don’t help them out because they can’t afford to either. Many student accommodations are over £4000 a year rent now, which is more than your years bursary.
I work as a freelance artist so most of the time i can work within my own time-frames. However my health still sucks balls. I struggle with fatigue like you wouldn’t believe. So often I get home, and all I do is sleep. It makes doing my school work even harder on top of trying to do freelance work too. But I consider myself one of the lucky ones.
Others aren’t that lucky. Despite having my bursary and working my freelance jobs – i’m talking many jobs too – I barely make ends meet. I’ve ruined my credit score on this degree even further than before. I’ve got to the end of my over-draft and even had my card declined. That never happened to me before. But it’s because I’m paying up front for rents, for train tickets for clinical placement. For food that’s not covered by my loans.
Healthcare students don’t fit your normal format. Most enter the degree much older than your average student population. Many have children and family. They need this bursary. They too probably already have a degree like me. Their story is probably similar. They saw a loved one close suffer dilibertating illness that inspired their calling into healthcare; after having children they wanted to become a midwife; or sometimes they just needed time to mature to discover their true calling.
The NHS treats a population as diverse as you can imagine, and it needs staff that represents the population it is treating. We don’t want a select few who can afford to take on the debt or that their parents will pay everything for them. We want them as well as the people who know what it’s like to be down and out on your luck, who know what it feels like to suffer in constant pain, who have children and know what a parent may be thinking, who know how tough times are. We need people who are compassionate, and creative and passionate and brave. And I don’t want them to be priced out.
My mom has always brought me up with the belief that I shouldn’t make money a barrier. This has hindered me in different ways – like buying things I shouldn’t have because I can’t really afford them – but not everyone is brought up with that belief and some people don’t have the emotional or financial support to be able to take a leap and do a course without any Bursary help.
You wouldn’t expect a kid to pay for their apprenticeship- you give them a terrible wage (which FYI- apprentices need to be paid more too). Nursing students, like all healthcare professionals DESERVE a LIVING WAGE. The bursary isn’t a living wage. But it’s something. Taking that away is disrespectful, it doesn’t acknowledge the hardwork and the goodwill that comes with the healthcare courses. The NHS does benefit from students. We don’t ask for much because we’re passionate about making the system better, about caring for society. It’s NOT about money. EVER. But this is forcing people not to have an opportunity, and potentially change the face of the NHS.
The consequences of not having a NHS bursary in nursing are SO much bigger than you’d ever think on first inspection. We’ll loose our social mobility of the profession, the career progression, the mentorship, we’ll loose people applying for the course, and have a shortage ina time that’s already suffering a shortage.
It’s bad news. And it’s not what the NHS stands for. That’s why I am standing with Nurses and all healthcare workers – for both the junior contract and the student nurses bursaries. We’re all one in the NHS. We work across professions and care for our patients and their carers and we need to look out for one another too. To the future of nursing, and all healthcare professions, and our care and the NHS.