(In)Visibility and Art [& suffering]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

cm3qiibukaa0-9i

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

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

Well, I’m being schooled,  once again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Break it down, build it up, make it better around the world.

I’m now officially in this incredible and super lucky position of sitting across multiple disciplines all at the same time; i straddle across being an artist, a designer, a healthcare professional, a researcher and a patient.  It’s super exciting but it’s also incredibly scary – even overwhelming.

I’m kind of unique in this respect.  There’s not that many of us hybrids rocking around in healthcare, or who are “out” about it,  but I think that’s going to change dramatically over the next few years.  Healthcare is building up towards a renewal, globally, to change from being just this service where you get things sort of fixed – and that’s it – discharged.  But it’s going to change into this service that is adapted to personal needs; both preventative and continuous care – in different models.  That the healthcare education model will provide art & design training in it too – that it’s not just all numbers and science – &  proper useful & enjoyable reflective practice training. It’s going to experience a (probably very slow but) beautiful renaissance – where things will be designed purposely with and for the user; whether that be the patient/citizen or the healthcare professional, using stories/narrative and lived experience and critical reflection in the process. That healthcare professionals have the tools to design things themselves too.

Whilst I am obviously very passionate about combining all of this together I attended a talk  last week by Elizabeth (Lizzy) Scott on the Femcare information strategy (Lizzy is radiotherapist leading this project) that’s undergoing within the radiotherapy department I train at.  I originally attended due to my passion for better patient information, but what this talk showed me was exactly the reason why it’s so incredibly important to think not just in terms of information; but the design and presentation of information and equipment is also equally as and incredibly  important in being able to enhance quality of life and treatment experience and compliance.

This Femcare information is aimed at patients who have had a radical course of radiotherapy treatment to the pelvic region. The side-effects of this treatment can have massive quality of life issues in the future for these patients, especially when it comes to their sex-life.

I believe, in general, we don’t talk enough about the effect of cancer on peoples’ sex lives and relationships, and their relationship with their body. Change goes deeper than the physical. It’s emotional. It’s psychological. It’s part of who you are. We know embracing the changes in intimacy can be one of the most challenging parts of feeling ‘you’ again. Butt issues like these can be – due to the very British nature of us – difficult to broach the subject – we may just brush it off – downplay it, really don’t want to talk about and feel embarrassed. We maybe really open to discuss it. But everyone is different and we need a strategy to reflect this.

The correct information early on is incredibly important in being able to facilitate better quality of life later on for these patients.  In the talk, we were given some leaflets – which had some pretty intense diagrams of how to use a clinical dilator, and of course a dry pastel rendition of some flowers  on the front to represent femininity? – how imaginative.

If you’re able to move past this leaflet, what comes next is the the dilators we provide – which are so clinical and intimidating and cold – as pictured below:

amielle-care

I can’t imagine what a user group would say about using these after treatment – whilst I can’t stress enough that they’re extremely very valid and very important – and i’m glad we do provide them rather than nothing. It makes me think the people who designed them didn’t really *think* about the user – just the use of them.

Lizzy discussed how she – too – wanted to redesign the Femcare strategy,  including the leaflet and had done some research into finding better dilators that may be less intimidating but do the job. Her efforts were rewarded when she found http://pleasuresolutions.co.uk/  – a  company with an ambition to help people reconnect and explore new realities after cancer, sexually. Whose products are specifically designed with clinicians and patients and with Japanese production as pictured below (made from a gentle Unique SoftTouch material with anti-dust coating

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I’ve never seen such an obvious need for redesign and rethinking with empathy and the end-user than in this case.

Imagine what the change in outcomes and perceptions would be if we in the NHS used the latter, widely, in practice. I suspect it would only be much more positive with more compliance.

What all this reveals to me is that we – as HCP and as artists/designers/thinkers/researchers – should use our superpowers of empathy and prototyping. Underlying both of these is a commitment to learning — learning about people’s needs, learning through experimentation and trial, and arriving at a solution through  discovery.

Creativity isn’t being used to its full potential in healthcare today. There are many other creative disciplines that have a critical role to play too. It is critical to create the conditions in the healthcare industry for designers/artists — along with healthcare ‘natives’ — to put the disciplines of empathy and prototyping into action.

When sharing my thoughts with the department (when I was asked to, lol) I said we make children’s hospitals all more accessible and aesthetically pleasing – why don’t we do that for the general population because it’s obviously do-able. They instantly jumped on, “well they’d have the money to do that”. But the fact of the matter is – if you’re spending the money on doing something anyways (as they were in this instance), or paying for clinically intimidating equipment that has obvious potential negative user-implication – it is either cost-nutural or at least more cost effective in the long-term. We need to stop blaming funding as a reason not to do something, we need to see past the short-term. Co-production/design can help us save money in the long-run through impact and investment. 

I feel like I am just at the very, very beginning of this journey but I am committed to this change. I believe in the power of creative practice — people-centered design/thinking — to radically transform healthcare.

Creative practice has the power to:

  • share and curate compelling stories that reframe issues.
  • I have the ability to synthesize complexity down to actionable challenges.
  • open up real collaborative practice
  • reimagining tools that enable rather than disrupt the healthcare workflow and empower patients/carers
  • advocating for the patient through new services, communications & products.
  • and much more.

We’ve got far to go but here’s my first and most important challenge as this creative hybrid healthcare professional:

1# People feel understood and cared for.

 

I can’t wait to see what Lizzy does to re-invision and re-invigerate Femcare to help enhance patients quality of life. Go Lizzy!

Tomorrow belongs to those who can hear it coming

I recently received some incredible, completely surprising and insane(-ly good) news. 

As previously written on a few blog posts, I had applied for a PhD – not ever thinking I’d even get shortlisted, but I was happy with the learning process itself. Pushing myself forward, keeping my options open.

Before I fell poorly, and my life got all shook-up, I had an art practice-led-PhD proposal on my desktop for about a year. I wondered if I would ever be brave enough to submit it.  It was – at the time – something not super well researched. It was about Artwork and labour, and the dark-matter of the artworld – I was hoping to build upon my peers and artists who I greatly admire’s work – such as Gregory Sholette’s political activist artwork, like 1980’s PAD/D and his thesis on Dark Matter (which is one the best books ever on the subject IMHO); William Powhida’s  incredible practice on the Artworld power and structures; ARTWORK by Temporary Services; AREA Chicago’s work (that I was so lucky to have been an intern there in 2009 in Chicago, USA – under incredible people), Olivia Plender, Charles Avery, Tino Segal, ect ect.

 

But something didn’t feel right about this proposal.  Part of it was the proposal itself, and another part was probably my self-doubt, was I smart enough to do it? Could I justify my proposal?  And so I never submitted it. It didn’t matter much anyways, because the shit-hit the fan and the months proceeding this – my perspective changed after my life became obviously more temporary than I had imagined at 23/4. And I was left,  broken. My plans, my lil’ confidence I had left and my future-vision even more broken.

Art & Labour  became irrelevant to me, and with the recession and the popularity increase in socially engaged practices (yay!), my once some-what original PhD enquiry into art and labour became hot-topic. Diminishing any hopes at looking at it in the future.

I’ve never recovered from this illness experience. And I felt like I lost a part of who I was. For both better and for worse.

 

My desire to do this art & labour PhD got replaced  by my desire to change healthcare practice for the better. To make the patient pathway better.  As described many times before in these posts – my personal experiences mixed  with having this intuitive feeling about art & designs possibilities in creating a better healthcare experience and system – whether through designed medical devices (think IDEO), to architectural planning of spaces, art-therapy, using creative ways to map the patients experience or journey to generate things, to app-design and virtual reality. The possibilities are completely almost endless. It’s so exciting, but I also don’t think culturally we’ve got there to accepting it as one of our best tools (of many) to make things better.
So I re-trained, in radiotherapy & oncology to help me be part of the system to make sure I always listen to our patients and I felt that radiotherapy was this area that’s open to innovation.  And I’ve had a blast. I’m actually really good at what I do, who knew? I sometimess get 98-99-100% in my assessments, and I often get compliments & recommendations off my patients about my care, not too shabby for someone without any science background. I’ve learnt a lot about myself in this process, and built my knowledge and skill set further. And I feel such a good part of the teams I work with in the clinical setting.  But it has been ridonkulously hard. There’s no denying this. Especially whilst trying to juggle part-time work, and crappy health-issues. It’s been a battle. A healthcare course really tests you, and your resilience.
 

I felt that being an artist, I could use all my criticality skills and creative abilities to make this change. I felt that art had a place here.And i’ve flexed it out:
I made the first ever radiotherapy patient info app & won a bunch of awards.
I made the A-Z radiotherapy handbook comic
I made the faces of healthcare website of stories
I made an interactive radiation oncology revision group using twitter, storify, google docs and tumblr.
I made the first ever student-led conference dedicated to radiotherapy & oncology.
And a bunch of other things, which you can see here: http://radiotherapysmizz.tumblr.com/

 

Then I saw a call out for PhD proposals.
I was amidst in applying for radiotherapy jobs. I had been told that some of my ideas were “just too ambitious” in my first rad job interview, and then a few weeks later an informal chat with someone who previously worked in clinical-practice told me that: “I need to stay within my band, it’s not a band 5’s role to think of making things better”. Which started to give me a sinking feeling.
I’m a true believer in transformational leadership – whereby everyone – whether a porter, or service user, or volunteer, or student, or band 5 or band 8 HCP – can suggest an idea to make things better – because they’re the ones who experience the system in their way. And may see it from a different perspective – and that we all have equal responsibility: to practice safe and compassionate care. And to work together – effectively and collaboratively – to make things better. It doesn’t matter where you stand. As Judy Hopps says in Zootopia (AN AMAZING MOVIE THAT YOU HAVE TO SEE!) “Life’s a little bit messy. We all make mistakes. No matter what type of animal you are, change starts with you.”

 

So, I emailed my amazing Radiotherapy professor – Heidi Probst – and told her how I really saw creative practice/methodologies as a way to make change in healthcare. She instantly helped me out, said she’d be willing to talk through things. She pointed out her call out for breast/trunk odeama  (something that had come up with my app with a previous patient who was on an award panel – as I hadn’t included it in the side-effects – showing specifically why this needs to be researched as we’re not really taught about it in practice -i hadn’t really thought about it) and the quality of life issues associated with these patients – and we discussed how a creative way would be able to bring out these narratives – in a way that more well-known scientific qualitative methods aren’t able to do. To really make the people heard.
 

Sheffield Hallam has a unique research center called Lab4Living – it’s this super cool place that combines art & design practices to healthcare research. It’s a collaboration between art & health & wellbeing. So I saw this proposal sit right in the middle. A collaboration – and interdisciplinary investigation – with an outcome of a rich diverse narrative in many visual forms – it would be both art and health. I was advised by a bunch of academics to submit it to both departments – both art & health – because it was both, after all – and I felt that I’d do the same kind of work where ever I was based. So I did. I submitted the same proposal. Not expecting ANYTHING in return. No shortlist. Nothing. Just this increased knowledge that this massive gap in patient information and care exists for breast/trunk odema.

And honestly – for about a month – I thought of nothing more other than the plight of these people. I began to see people with trunk swelling on their posterior thorax with no advice in clinical practice. And this whole experience intensified something. Like when my eye doctor gives me option “1 or 2” when he sets my prescription, I suddenly saw option 2. It feels like it has heightened the stakes somehow -— reminding me repeatedly how precarious life is, and how every act is a contribution to a finite set of acts, that should be contributing to a bettering of the world (in whatever form that takes). Thinking constellations and not just stars.

Then I got shortlisted in 2 departments – and I panicked. I never envisioned this to happen. in-my-wildest-dreams!

So, after feeling like I was betraying both departments – I interviewed in both departments – each time feeling like I had let myself and the people who had given me this chance down. Both departments asked for 2 different kinds and types of presentations. PhD interviews are really hard to judge! I expected my chance to end there.

I don’t really know what happened in between.

There’s a quote that I’ve been thinking about for a long time, about having to let go of our planned life, to allow us to get to the life that’s waiting for us.

And when I fell sick, I let go of my planned life. And I went into radiotherapy but for a long while i just didn’t know what was waiting for me. And that has been one of the hardest parts. I now feel like maybe this is what’s been waiting for me. This beautiful combination of practices – both creative and health.

“You don’t understand anything until you learn it more than 1 way.” —Marvin Minsky

After much soul-searching. And I mean, really soul searching. I decided art would be the best place to sit – for the freedom. Though this decision did not come easily.

Getting this fully-funded PhD scholarship in art feels like I’ve come home. I’ve been lost, but I’ve been found. Changed but not fully forgotten. For a few years now I have been caught up between all that was and all that could have been and be. You feel lost.  As soon as the bones mend, you forget about the fracture, but you don’t forget that experience that lead to it.

It’s a bittersweet moment because I wouldn’t even be here if it wasn’t for Heidi’s help, and I wouldn’t even be interested in making healthcare better through creative methodologies if I never fell sick in the first place.

My great friend Magda pretty much sums  up the bittersweetness perfectly with her quote to me: “Life sometimes gives us lousy hand of cards and we play it like it was fucking aces!! that’s what we do.” Someone make this into a motivational poster.

It is at this juncture that I want to REALLY thank all the people who has made this possible – a reality- Heidi, Alex Robinson,  Jo Doughty, Laura P –  all the people in art – Becky Shaw, Kathy D, Penny M, Claire — so many, many other people  – ALL OF MY FRIENDS & my mom & nan & bro – for all of your help. For taking a chance on me, for believing I could do a PhD, for inspiring and advising, for your belief in making healthcare better. For hoping for a better future for these patient. For all the talks, for all your time, supporting me. For taking a risk.

I am endlessly grateful. I know I wouldn’t be here now if it wasn’t for these people. I never take anything for granted and I feel like I can never repay y’all.

For everyone whose had a dream, and for all the working class kids who get told they can’t even make it to university — this is for you. We can do this.

Tomorrow belongs to those who can hear it coming.

My new chapter begins in September. And I am SO nervous.

No risk, No adventure.
To innovating healthcare by focusing on people & their experiences!

Your good friend,
Hopefully, future Dr. Smizz 😉

PS: my radiotherapy career isn’t over either.

 

 

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The world isn’t yet done.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

photo-4.jpeg

 

Today, I discovered that I’ve forgotten my path, maybe even who I am.

“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.

resume2011drawing

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 never want to forget who I am again.

 

 

Hoping for a 2016 where we open the doors wider and take care of each another

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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 old life 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.

And at first, this change was really, really hard. I’ve questioned my decision maybe a 1000 times. But it still feels right, even when I have to do 100 pointless academic tasks and I miss having free days to make and draw things I want to make.  But together with my friends we organized the (2014 & 2015) first student led Raditation oncology conference, I made the first radiotherapy patient information app, got a drawing published in journal of medical imaging and radiation sciences, won an award for my app, and presented at the international  Design4health conference, did some clinical experience in North America,  and went viral with this blog post about what we do in radiotherapy,  raised £850 for Doncaster Cancer Detection Trust and some more. All through combining art and radiation practice and empathy. All in 2015.

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!

Your good friend Smizz x

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What being an artist, trying to learn how to code & feeling like I’m dying has taught me.

It’s kind of exciting not really fitting into pigeon holes. They say I’m a Smizz of all trades, master of none. I’m currently designing and coding an app in my (limited) spare time, which I hope will help to aid patients in having a better patient-centered-care experience. The app hopes to include all the information for their treatment, and later on become interactive- enabling the patient to get the support they really need (financial, emotional, physical, ect) by using a series of questions over a period of time, and documenting how they’re coping/feeling/side-effects, ect. It’s exciting stuff. But learning coding for this is a steep learning curve.

As an intermediate dabbler in website designing and coding, and now embarking on objective-C and swift codes I am no stranger to being able to take a problem and see the inevitable solutions, but also I’m pretty skilled now in being able to hypotheize the potential for disaster – what problems could I run into using a certain code with another, or ethically, or in language, ect. We use this kind of thinking in Healthcare too. It’s figuring out what our best practice is by eliminating all the problems for optimal experience and outcomes. In art, we use these problems too, to breakdown into manageable truths. As a Marxist, I’ve naturally developed a somewhat cynical ability to breakdown systems really easily into oppressive segregations & loopholes  & weaknesses.

But thinking like this naturally, or often, comes with its consequences. Your every day problems become disastrous in your mind. I catch myself getting caught up in this mind-set – Unanswered phone calls become bad-news,  someone being late becomes a car accident, late arrivals due to delayed trains and buses become missed opportunities. Being poorly and not doing as much as I used to became career stagnation.  The omnipresent of ‘but-what-ifs’ continue to grow.

However, now I try and use this unconscious worst-case-scenario as a way to panic myself into action. Rewards come from risk, and a life without risk is a life that’s probably pretty boring.

When I arrived in the land of the ill – i wasn’t sure i was going to survive. It was the worst I’ve ever felt in my life. I made a list of all the things I’d do if I ever recovered. If I got a second chance. I mean, yeah, i had led a pretty interesting life up to that moment, but I had made sacrifices in the present for a future which I had no idea I’d ever get, as we all do. As a patient, I often felt misunderstood. I was demeaned within the healthcare system 1 or 2 times. I felt ashamed for being poorly. (As well as being shown amazing compassion).  I could see levels of the system that I knew I could instantly change if I was in the system (such as just simplying listening to the patient, making them feel heard). I also ferociously  read everything i could on cancer, & healthcare and compassion. The experience made me want to be the change I so desperately wanted to see as a Patient. I thought, mane, this system needs some more creative/different thinkers! I have this habit of trying to game systems. So when I started to get back onto my feet a little bit, or learning to live with what was happening, I began to realize some of those things on my list. After talking to a lot of people, I realized the potential possibilities so I applied & started my healthcare adventure.

Being told that it looks like you have a malignancy forces you to realize that life can end literally any time. And this quickly changes what you deem worthy of your attention. I was furious at myself for not being as present with friends and family as I should have been. All the nights-out I missed at university, all the times I wasn’t empathetic to my housemate for his anxiety with post-graduation life. I was absolutely Furious! These were things I hadn’t even calculated in my head until I got ill.

The junction between mortality and mundanity is an exquisite source of perspective.  I often sit on the bus, watch a sunset and I think about how these boundaries between are treacherous and illusory.  It’s hard to gain this kind of perspective, and it’s equally hard not to lose it, not to start slipping back into old habits. Partially for that reason, I enrolled onto my radiation oncology course. I love art, and it makes me happy and fulfils my soul.  But I do miss the way people think in art, and the discussions and dialogues when I’m working in healthcare. I miss the playfulness of the every day I had when I was a fulltime artist – but I believe there’s somewhere in between for both areas.

Art makes me the person who doesn’t trust everything I am taught in the healthcare system. Art is the reason why I can understand and empathize with a persons story, with the person and not just the disease that we’re treating. Healthcare makes me appreciate the edges of life, the possibilities, the beauty & tragedy in it. Designing something brings these 2 worlds together for me.

But coding has taught me about action. This is extremely important right now. We are standing in the middle of time, where great injustices go untouched. Architects of the financial melt down continue to swoon with the governments. & yet our laws and governments continue to value capitalism over humanity. Under-funding the NHS, profiting from education, trying to put laws into place to criminalize our movements when we try and mobilise against things that are wrong, cutting funding for those who are in great need of it, where we give up our freedoms, and allow ourselves to be spied on by the NSA, ect all under the guise of protection.

Change doesn’t roll in on inevitability, it comes with continuous struggle.

So, just as I promised my bleeding, puking, bruised former-self, I plan on raging against the bullshit, and make things that can help others, and keep the door open with kindess & listen. I will wander for a while: call this just 1 of many future sabbaticals.  Life isn’t linear. Neither is coding, making, changing.  In the end, I think my job over-all isn’t healthcare student, nor artist – but to remind myself every day that my time is limited. And so is yours.

As Aaron Swarts used to say, “What is the most important thing you could be working on right now? And if you’re not working on that, why aren’t you?”

 

Here’s somethings I’ve been working on:

http://livemappingsmizz.tumblr.com/

http://f-o-r-c-e.org.uk/

http://gravity21.org/

 

Growing Up A Second Time

It was my good friends birthday yesterday. She turned only 19 years old. Still a baby. Although 19 was only 6/7 years ago for me, it seems so much longer. Being in your mid-20′s isn’t that old, but I feel like I’ve aged 2 lifetimes in the past 3+ years, I feel like I’m ageing in dog years. Maybe ageing like that makes you look back a bit more.

As I was out with my young course friends, I thought about what I’ve done so far in and with my life. And what getting older kind of feels like.

Philosopher Alain De Botton tweeted today that ” ‘Growing up’ in many ways a long process of learning to put up with stuff. Eventually, even the idea of dying.”

I came from an incredibly poor family, mostly it was just my mom, my bro, and me with my nan popping in often.    As a result I didn’t have many things considered as “cool” growing up. My clothes were cheap, and shabby. I was a bit weird, I loved hip-hop and animation as a 8 year old. I had this incredible imagination. And I was kinda fat. This made me such an easy target to be bullied every-single-day up to high school. I tried my very best to be “cool” and “likeable”, but we didn’t have the money and when I did save up to get some “cool things”, the clothes looked weird on me. It looked insincere & wrong.  Luckily, time and age taught me to slowly accept myself and follow what I like. And the strangest thing was, the more I accepted myself, the less grief I got from my fellow bully students. In fact, almost the opposite happened. I got more respected, and more known once I had accepted myself. Funny thing that, self-acceptance.

After my GCSE’s, we were made homeless (for too many reasons) for 6 months. We lived with my nan for a few months, until her landlord knew she was over exceeding her limit of people in the house. And then we went from temporary accommodation to temporary accommodation, all whilst I was trying to study for my AS levels. We finally busted the system and got enough points to get a council house. Crazy point: being homeless doesn’t give you enough points on the system to be eligible for a council house. Or it didn’t in 2004/5. How fucked up is that?  I remember at the time being incredibly embarrassed about this. I didn’t tell a soul for months. But it just reinforced my love for Marxism and social justice. I was voted, by the whole of Doncaster by kids, to be a Youth Councillor for the Donx Youth.

I lasted about 8 months (and resigned) when I realised we didn’t really do that much except organize fun pizza parties.

I met Ed Miliband, he was the new MP the North Doncaster then. My friend & I had gone to complain about UCAS taking our money and then not processing our applications making our application late, and after the deadline – potentially affecting our uni offers (It didn’t). I stated it was because we’re working class, and the system was against us (Marxist in me). Of course, it was just a person not doing their job correctly, some clerical error. I can’t remember what he said he’d do. But I do wonder how many 16/17 year olds go to see their MP these days? You guys really should if you have an issue!

Ed asked, since he was new to the area, if I could organize for him to come to our school. I was pretty stoked with this & ended up doing a lil work with Ed. I had no idea back then that he could be the potential prime minister of 2016! (Hopefully, eh?!) – People, strangers, you meet will always surprise you. Everyone has a story.

I then was head-girl of the school in 6th form, and then also got excluded (for political reasons) as Head-Girl. I was also embarrassed about this. But as time has gone on, I realized just how kind of awesome it was. And it’s just another crazy story I get to tell. This taught me that the system, if it really wants to, will make sure you’re screwed over if you try and disrupt corrupted power.

As soon as I turned 15 my mom made me get a job. I didn’t even want one.  And earnt a measily £2.50 per hour of my life. I knew my time was worth more than watching kids throw plastic balls at each other and fish dirty nappies out of the ball-pool. But as I got older, I realised why my mom made me do it. 1.) to instil a sense of labour and work and pride in earning your own way. 2) to learn how to interact with people you may never interact with outside of that environment. I swapped the wacky warehouse for scraping chicken fat off trays at ASDA in the rotisserie for 2 years every weekend & some more, but for £8.50 an hour. Not too shabby for a 16/17/18 year old. I saved all my money from this job, & EMA and took my mom to NYC for her birthday. It’s one of the best trips I’ve ever had.

I went to study Fine Art at university, I’m not sure how I came to decide to go to university as I’m the first person & so far the only person who has gone to uni in my whole family. It’s something that was never discussed. I just came home one day & was like, oh I’ve applied to university! Like I’d just subscribed to a mailing list. I remember feeling very casual about it. I even thought that once I got to university, that I wouldn’t be smart enough, get home-sick and drop out.

But I was pretty wrong. I ended up bulking up my time an extra year & getting a BA & a MA.  I didn’t really return home for longer than 3 weeks for 4+ years.

My first uni year I applied to do Camp America. I ended up  being placed on an island in the middle of a beautiful, clear water lake surrounded by mountains and trees in New Hampshire. Once I arrived to USA, I stayed in an industrial part of New Jersey for a night, I had to catch another bus at 5:30am to take me to port authority bus station, NYC, where I had to catch a greyhound bus to Boston, switch to another bus in Boston to a Fullers Gas station in Meredith, NH. (a lonely, virtually empty – and closed gas station when I got there) Where a complete stranger from the camp was to meet me, alone. I felt like I was some tame, none-drug induced version of Jack Karoac’s On The Road at age 18/19. The age my friend just turned.

I had a decent enough time at the camp, but I felt like an outsider in a very -family orientated family camp, enriched in family tradition – where everyone had been brought up together. I counted the days down to when I could leave and be back in NYC. The strangest thing was, once I got to NYC for a whole week. I felt incredibly lonely. I hadn’t realized that I had accustomed myself to Sandy Island life and friends. That’s the thing about time, it punishes you later for wishing away your time.

I decided to do live my fantasy of “On The Road” I had about $500 in my pocket from my camp summer job and a flight home from LA. I was still in NYC. So I took a bus to DC (I didn’t have any sort of game plan, don’t ask how I was planning to get to LA?!) but ended up meeting some people around my age who were going cross country in  a van and camping. They asked if I wanted to join them so I decided to tag along. We did > DC > West Virgina and went Wild Rapid Boating > Virgina > Tennessee > Alabama > New Orleans — where my identity was stolen and I  was fruaded and had no $$ in my bank account. At this point I had about $150 to last me. I cried. I had no idea what to do. But  thing is, things work out. I was with good people. My mom wired me $80 >> we moved onto Texas, survived a mild hurricane >> Hitch-hiked over the border to Mexico, got really drunk and had to beg my way back into the USA >> New Mexico – saw some crazy bats > Went to Monument Valley and stayed on Native American land. I’ve never seen skies so clear. I slept outside on the ground in my sleeping bag instead of the tent – not even thinking about scorpions and crazy spiders and snakes that could have been hanging around – to sleep under the milkyway >> Went to Zion – hiked angels trek, and through rivers, went to Grand Canyon and we partied so hard we got asked to leave. >> We went to Vegas where I fake-ID’d my way into clubs, and bought nothing because well I had no money. But my new travel buddies help to pay for my liquor. We did a limo and ate at this super cool sushi place just off the strip. My first ever sushi experience> We drove to LA where we drank in a dive bar just near downtown LA, under a bridge. I felt like I was in some indie movie. This was the last night I saw my travel buddies. They were carrying on to San Francisco. I had my plane to catch.

That was the last time I saw them. I’ve seen a few of them since and we’re all still friends on Facebook. But this taught me to talk to strangers, take calculated risks, some times not having plans works out way better than having a rigid plan.

I once lived in this hip-apartment in Williamsburg one summer, that over looked the NYC skyline with a bunch of cool people doing internships for MTV, Saturday Night Live and The Onion – all on their daddy’s $$$ funds. I was funding my own dream. One of the dudes is an upcoming comedian on the West Coast and was in that Oscar winning Ben Affleck movie.

We were a mixed group of kids, with high energy, big dreams. Wide-Eyed in NYC. I ended up working for some of the most amazing and awesome people who changed my life in a then Chelsea Gallery. I remember how hot a NYC summer is… Coldplay Vida viva song was hot shit too. That album & Chris Brown Forever always takes me back.  I asked M, the gallery boss, what her story was, how did she and her husband open the gallery. She spoke about communist Poland, trips to Chicago that made her fall in love with NYC, a burning love for art & art-history, selling shoes, joining rich upperside ladies visiting studios and collections, borrowing money & opening their first gallery that’s still going strong 28/29 years later.

I remember every single piece of art in that summer show and if I even really think about it – how much each piece of art was being sold for. I’ve never been so upset about leaving a job (even though it was so short), some people, a place before that. But one of my distinctive memories is my last day there, i walked out of the gallery, turned left walked down to 9th ave, kind of holding tears back looking up at a clear blue hot sky. I walked to the first working pay-phone I could  find to call home to my mom to say how i was so happy that i had this amazing opportunity, but how sad I was to leave.  I thought that I’d probably never see the Postmasters crew again, I thought I’d get forgotten about because that’s how my life was/is… Important people just fleeting between moments.

Luckily, I get to go and see them every year and this makes my heart  so happy.

I left NYC and worked in a bookies (betting shop), trying to gain back the money I spent on my NYC wild adventure. I learnt how to bet, how to calculate all different bets like round robins and how to really bet on horses. That a favourite horse is statistically 33% to come in at a meeting, if you’re willing to chase your money around. I learnt how to follow soccer and do football bets. A great way to make money if it accumulates!  I saved enough money to take an amtrak train ride across USA the same summer with my good friend shivvers.

She made me a rule. I couldn’t talk about art the whole journey. I suspect that’s all I was bothered about back then. We stayed in the Bellagio Hotel in Vegas courtesy of her dad. Shivvers wouldn’t even let me open the mini-bar so we created our own from mini’s from the vegas giftshops. We had a cab driver who had some sort of turrets and cursed death on every driver he drove past. I learnt that it takes about 3 whole days to take a train from LA to Chicago, and that you should pack spare clothes and not just check them all in. There was a guy who was giving strangers Tattoos on the train (certainly not us). We sat on the train, making up our own before sunrise stories up for all the strangers. 2008 was a good year. I keep telling the kids on my course that 20 was one of the best years of my life.

I taught spanish kids english in Hastings for what I think was the Spanish Mafia. They paid me about £400 a week in fresh £50 notes, cash. I’d take it to the bank and every time panic that they might question me. They never did but I was sure they thought it was dodgy money.  These Spanish kids were clever, and spoke many languages. They learnt quick. I remember my favourite and most promising student failing her exam. She was the only one out of all 16 kids I taught, but I felt a sense of  responsibility & guilt for it. That I was the reason why she failed. Perhaps it was nerves. Perhaps it was my teaching. perhaps we were both complacent. I often wonder what they’re up to now and how their English is.

I went to Chicago and worked on social art projects, and at the university of Chicago. I saw proper Labour Activist movements, I worked with real poor communities. I wrote things for great art magazines. I lived with people who worked at the MCA and Hyde Park Contemporary Art Center. I saw Obama’s house, I saw the Home Alone house, I had my first ever real Thanksgiving, and lived through the coldest weather I have EVER EVER walked through (about -20). These experiences woke something up in me, I went back to standing true to what I loved doing. Drawing and comedy and truths.

I wanted nothing more than a 1st class degree in art, but I couldn’t figure what I was missing to push my grade in to the first category. When I decided to go back to what I love, not worrying too much about the marking criteria, I finally graduated at the last hurdle with that hard worked for first class degree. Another lesson to be learnt. Sometimes you need to stick to your guns and your integrity. Don’t just do something to please others or because you think it will sell. People can see if it’s not true. And remember not everything that glitters is gold.

I have since never had to use my degree. No one has ever asked to see it, except when I went back to study. i do remember my art lecturer sending me an email telling me what I got. my heart was practically in my mouth, I opened the email using Boltbus free slow wifi on a bus from NYC to Boston (On my way to work back at camp some 3 years later from my first experience). I was stoked. I just wanted to tell the world! But I was travelling alone, so I did the next best thing. I wrote an email to my mom, a few select friends, to M at Postmasters and to a past lecturer michael corris who I looked up to in many different ways.

The first year after graduating with an art degree can be pretty hard. They never really tell you that, you assume it will be hard but you’re hopeful that it won’t. I graduated in the thick of the new recession. people were loosing their jobs left, right and center. Companies were being acquired or forced into bankruptcy. I got lucky and worked part time in a bookstore with another group of amazing people. Nothing prepares you for the doubt that you feel about following what you love when you consistently get rejected. But with rejections come some lessons. Lessons turned into opportunities and more opportunities and more lessons to learn from.

Things started working out for me with making a basic living with art and drawing. And then I started feeling all funny. I experienced fatigue like I’ve never experienced in my life, I was having these drenching nightsweats, I couldn’t eat, I had nose bleeds constantly, I had pretty bad bone-pain. It felt like flu-like symptoms but without the flu. I went back to the USA where I ended up being told it looked like Lymphoma. Cancer. I was like, fuck.

My whole life view was flipped upside down. Things that I thought was important didn’t seem as important as they once did. The unimportant things felt way more important. Time felt heavy. I had to grasp, in that moment, that my life and everything I’ve known will eventually blink away in a matter of decades, if not years, if not hours, and I will cease to exist. Which is hard, because when you’re young – you feel kind of invincible. Like you can put things off, because there’s always tomorrow, next week, next year. But there’s isn’t always more time.

Things carried on as normal though. As if nothing had changed. Which can be the most annoying thing ever, because I guess I’m still hurting and I want change. I want more urgency in things. I learnt from being unwell to ask for help if I need it. We can’t do everything on our own.  I decided to learn from these experiences and use them to make a difference, so I went back to university and I am now studying Radiotherapy & Oncology.

I got hit by a car on my bike 2 weeks ago and broke & bruised my ribs. I flew over my handlebars and through air, I flipped upside down and landed on my neck.  And I realized that there’s far more probability in me dying from being hit by a car than most other things.

So, what does it feel like to be older?

From time to time something reminds you of the past. Things hurt that never hurt before. Music was definitely better 10 years ago than it is right now. You start to buy things because they wash well, and shoes because they’re much more comfortable to wear. Time goes way faster. Experiences mash together like a tie-die. Leaving only horrendous memories and those euphoria, bucket-listy, nice moments that help build who you are in this very moment. There’s nothing much else in between.

When you get older, things you thought were important when you were younger aren’t as important and those things you thought were unimportant become more urgent.

I’m left looking at my younger course friends, what life experiences are in store for their next 6/7 years on this life, and just how much different a 19 yr old mind & body feel like compared to a 26 yr old mind/body.

I ended  my friends birthday with this thought:  What if we celebrated our expected years left instead of our years already spent?

 

 

 

 

 

 

 

 

 

 

 

 

Trying to Understand Early Russian Formalism & the Smizz Life

1. ABSENTATION: A member of a family leaves the security of the home environment

Picture: It’s a few years ago. I left for America. I love America.  Except I wasn’t leaving home on my usual terms. I was feeling super run-down. I had been having nightsweats, bone pain, this insane fatigue that wouldn’t subside. The UK doctors told me it was just a “mono-style virus”, so I left for work & adventure. Except my boss in the USA was having none of me just waiting out the virus. She made me see a doctor, who made me see a haematologist oncologist, who then told me it looked bad & that I needed to go home & get it sorted ASAP.

I didn’t though. I thought that this guy is talking shit. I ran away from this statement. I suddenly felt the weight & value of time. I did a pretty amazing YOLO roadtrip visiting 3 coasts of America with friends, all with that thought in the back of my mind.

 

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In my younger days, I studied Media Studies as one of my A-Levels (& got an A, of course). We looked at a crazy Russian Literary Formalist called ladimir Yakovlevich Propp who came up with something called Morphology of the Folktale  which basically looks at breaking up fairy tales into sections and 31 functions/options of resolution and narrative. His elaborate categorisations of classifications pegs plots points: tricky, guidance, rescue, ect.

Propp claims that you can shuffle any of these into constant rearrangements. They mark a moment where an action takes us in a different direction. It’s a nice way to to look at disruptions. He says everything proceeds from us loosing our place.

 

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2.) INTERDICTION: An interdiction is addressed to the hero

We’re out of order and we’ve hardly begun. I was instructed to not stay in the USA and wait out what was happening to me. But I did.

 

3.)VIOLATION of INTERDICTION. The interdiction is violated (villain enters the tale).

The villain and hero here are both myself. The villain is an illness. A feeling of ill-health. A feeling that has slowly taken over and taken everything that was me. I was just in my early 20’s. I had never been properly sick. Sure I had colds and sore-throats, and sickness bugs – but this felt different.

I was a self-absorbed young adult with gritted determination to make it in the art world.  I had learned to be different, to try harder – no matter who I left behind. I had started to get just a tiny-lil bit cock-sure of myself. Just a tiny-tiny-bit. I had just got a prestigious artist residency at Site Gallery when I got hit.

I’d arrived somewhere without being invited.  Maybe I didn’t have the right to be in that place. Maybe that didn’t make it right that I fell ill, but maybe I wasn’t purely innocent either.

 

4.)RECONNAISSANCE: The villain makes an attempt at reconnaissance. The villain (often in disguise) makes an active attempt at seeking information.

 

There was no tricky. But there was deception. For months and months, and months, this illness  hid away. Making itself really hard to put a name to. To be recognised. But, it knows who I am. It knew I stayed up working until late, that I was fairly active. It fed on my inability to get rid of it.

 

8.) VILLAINY or LACK: Villain causes harm/injury

The illness took virtually nearly everything. I no longer can work all day and stay up.  It made me work less, sleep more,  which in turn made people forget about me, helped me to ruin my own reputation I had worked so hard to get. It made me bleed in places I never knew I could bleed. I have days where I literally feel like I might be dying, I catch myself looking super tired & worn-down in pain in a mirror & saying to myself: “I’m ok, I’m ok, I’m ok”. I’ve lost days, weeks, months of my life. I’m still  having pain which no one understands. This makes me feel alone.

 

17.) BRANDING: Hero is branded (wounded/marked, receives ring or scarf);

I was branded. I have no scarfs or rings but emotional scars & a few physical ones. Somethings have shifted under my skin. Emotions and lymph nodes. Things pressing on things which present as neuralgia or headaches or bone aches or passing outs. Swellings around memory, swellings around my intellect and pride which hurts.

 

14.) RECEIPT OF A MAGICAL AGENT: Hero acquires use of a magical agent

Through this struggle, my whole world view changed. I gained this whole new perspective, this whole new weight of the importance of empathy. Before, I now realise, I had little empathy – towards everything. I wasn’t a dick or anything, but I didn’t or couldn’t understand others plights – because I was so blinded by myself. I just understood the system that affected others, not HOW it made them feel & how that affects them.

am more thankful. It’s just not in the way that’s immediately assumed. I am grateful for the pain, because now I understand it better. I am grateful for the struggle, because I can be of more use to those in the midst of it.

 

29.) TRANSFIGURATION: Hero is given a new appearance

I used to only work in art stuff. Now you can find me in both the art-world and in healthcare. I wanted to re-train myself to work in healthcare to both give back, and to be the person who understands because I felt (and still do) misunderstood on how the villain really affected my quality of life. The central question I now ask myself is “What’s the relationship between caring and understanding?”

 

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When I think about my life in these terms I see  all kinds of functions that I never asked for: struggle, challenge, trickery, frustration. There’s some fighting, and a lil bit of winning.  The gold-dust comes in the realisation of personal-growth and amazingly supportive friendships along the way.

The materials of my life, as memory recalls and deforms them, will always involve the villain: the stranger, the illness.

When I casually drop into conversation to people that I’m studying radiation oncology, as well as still working as an artist, and still feeling shockingly poorly, they look shocked. They think it’s a huge turn, or that art must not be working for me. But it’s not really. I sit in class, reflecting upon my own life like text. I feel like i’m still constantly shuffling together pieces of a puzzle i can’t see the edges to yet.

There is no function designated for this last part. Where the hero turns to studying healthcare & medicine alongside art to try and understand her own hurt and use it to try and help her to understand others hurt.

 

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23.) UNRECOGNIZED ARRIVAL

I could spend everyday like it was a holiday. I feel like I deserve to spend my life constantly on vacation. But you can’t. You have to return to normality. But this is hard. It’s hard to return to a familiar land, to return home, to do everything like you used to, when you no longer feel like yourself. Things have changed.