(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.

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Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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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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learning to lean in

Words are  often a poor substitute for imagery.

One of my Doctors: “So Sarah, why do you want to work in healthcare – even though you’re an artist?”

I spoke about my own experiences & the opportunity artistic practice can offer to enhance care and services – the ability to use a different perspective to make a difference.

He turned to me expressed his heartfelt regrets and said: “Art gives you, like flying, something that other people don’t have.”

It was as if he was saying, what you lack in a functional immune system, you make up for in other unique ways.

And with this, a few days ago I found out that I passed my radiotherapy & oncology BSc Hons degree with a 92.6% First-class degree!!!

I have a fully-funded PhD scholarship offer bringing together 2 of my passions together (art & healthcare) that starts in October, and I leave for the U.S.A in 5 days times for a good couple of months. I genuinely can-not-believe it!!

Not too shabby for the working class kid with no science background or previous healthcare working experience.

I am humbled, and most of all feeling extremely privileged to have shared this crazy journey with you all. I wasn’t sure I was going to make it to this day, in all kinds of ways, and for this reason this achievement feels incredibly important and special.

For a long time, I had made who I was by being a work-horse. I could totally juggle 8 things at once. I could totally stay up til 3am in the morning working on hopeful-kick-ass projects/ideas/gigs – and then get up at like 9/10am the next day — no questions about it.  My mind constantly buzzed with all the cool things we could do. I’d sleep with a notebook and jot down cool ideas in the middle of the night. If you needed something doing – I was the person! But Nothing prepares you for the day when you can’t do what you do any more.

I didn’t feel like myself. I felt broken. I loathed who I had become.

There I was, hopeless – barely there. Not feeling alive.

I cried. I felt sorry for myself. I didn’t believe it was happening to me.

I’ve spent the last couple of years searching for the Old (younger) Smizz. I’ve looked for her all over  —But there’s no going back to my old life.

I am broken. There’s no protocols or discharge instructions to guide people back to their lives.

But I am alive.

I do think about that a lot.

 

This degree course allowed me to gain some control, it gave me some much needed (if not too much) structure and helped me to try & hopefully make a difference. After all, what is the point of saving a life if the life isn’t a meaningful one?

And the friends I’ve met whilst doing it – all with their own personal stories – have helped to inspire, and alongside all my other friends, they’ve helped me to carve this new path for myself.

It highlights the fact that I’ve never actually accomplished a single meaningful thing by myself, and this is included.

The past few years has taught me that reading the fine print of your mortality is a great sifter of rubbish.

In the chase for the extraordinary we can sometimes forget to embrace the ordinary moments. It’s about embracing our vulnerabilities and learning to ask for help. We also need to invest in others without expecting returns – because that’s real love.

And it’s about realizing that your time is valuable — what you do with it, how you spend it and with whom.

 

It’s picking yourself up when life knocks you down and finding beauty in your bruises. But this might take years and years to do, it’s not an overnight fix. We are all damaged & broken & traumatized & mistake making in some way or another. But it doesn’t define who we are. So don’t be so hard on yourself. And Don’t be so hard on others.

3 years ago, I literally couldn’t get out of bed. Today marks a HUGE milestone for me. I got out of bed each placement morning (1000’s of hours of free labour) (i wasn’t happy about it lol), I ground myself down, I gritted my teeth and pushed through most of the fatigue & pain, and some how completed 3 years clinical education. Super early mornings, physical lifting, lots of moving, emotional distress, stress, deadline after deadline, many naps where ever I could find them, doritos and a 2 year long headache. And somehow I got here.

Whilst I still live in deep pain, and still haven’t learnt my fatigue limits, and I’ve lost feeling all on my left side, and a headache that often leaves me crippled to the floor. I’m proud of how far I’ve come. Recovery is hard. I don’t think we give enough people credit for that part.

I Never, genuinely – hand on heart –  would have believed any of this would have been possible.

So thank you to YOU ALL.  My mom, my bro, my nan, my amazing friends – old & new, stafff, lecturers, my twitter fam, my internet friends. Anyone and everyone.
Without your advise, support, jokes, cleaning, food, tears, stories, knowledge and just being there and accepting I take 7-10 business days to return a text/email – I’m not so sure this would be the blog update it is today.

I plan on using all of my time allocated.

And I can’t believe I’m here.

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The things I’ve learned from a broken mirror

Saving a life doesn’t change the world, but for that person, the world changes forever.

I’m right at the bittersweet end of my 3 years of  BSc Hons radiation-oncology school training. Assuming I pass the last few things, in 3 weeks I’ll be technically allowed, once my HCPC registration and license and indemnity insurance comes through, to plan, care for and treat people who have cancer with radiotherapy. Which is really scary. I will be responsible and liable by law for the safety of my patients.

And yet, the 3 years has gone past in a whirl-wind. It has been both long (no thanks to working clinically all through the summers) and extremely fast. Energizing and completely ball-breakingly fatiguing. A mixture of: I’m not ready to be qualified yet to I just want to do the job, already! Slowly ticking off endless assignment after endless assignment. Slowly being able to reflect upon how far we have come.

And now I write this post. With a cool raspberry lemonade in one hand, I stare out of the window with the sun in my eyes and feel kind of relaxed for the first time in a long time.

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

A few years ago (y’all know the story), my original life had become broken by ill-health and everything changed.  No one should ever underestimate the lack of quality of life living with horrible, endless, chronic pain and fatigue offers.  And as a result, my old life just didn’t fit in the same way anymore. So, after drawing people wanting to change the NHS to make it better using their health experiences, and this personal medical experience of mine – I decided to give up my planned life of being a full-time artist and retrain in healthcare (with the perspective of an artist). This was because I needed to get closure, to understand the human-body, to gain some control from this knowledge, and a routine – to try and ease the fatigue (that turned out to be a LOL – there’s no rest in healthcare): but most of all, my biggest motivator was  to try and make a difference and really care for others.

This was because the NHS was the first place I had been shown any real true kindness  from complete strangers when I was at my most weakest. I felt (& I feel it even more now than ever) this pit of gratitude at the bottom of my stomach when I think about the care I have been given & continue to receive – from everyone in the NHS, not just doctors & HCP but to the students, receptionists and porters, ect.

From my GP (the awesome Dr. Marco Pieri) who would say we’re friends. And in the beginning, I thought that saying we were friends was weird.  I was suspicious. It’s just his job? I knew nothing about him.  But as I grew older with him, and cried on him when I was at my lowest (i don’t ever cry in front of people), and moaned, and repeated the same endless complaints at him -much to his dismay – he built up this incredible knowledge about me as a person – not just what was wrong with me. He asks me about my work, my life in general and about my fears. He asks me what I want to do in regards to my care and he gives me lil’ prep talks (even unsolicited NHS job interview advise) by telling me to keep going and just to live life to the fullest (fo’ serious). He was one of the first people I told (by chance) that I got this awesome fully-funded PhD scholarship. He stopped me from jumping around from random GP to GP, because I didn’t understand the importance of continuity in care at the time. I feel like he intrinsically cares – not just for my wellbeing – but for the whole population of Doncaster after discussions with him on his passion for improving life expectancy & outcomes for the Donx to meet the rest of the population (thus his role as a clinical lead in the Doncaster CCG).

It turns out that he is in fact both Physician and detective, and through time, he also became both healer & friend. And through experiencing a lot of his kindness, his humor, his knowledge, his time & care – I felt like I needed to return it.  I wanted to be that person he was for me – for my patients; to make them feel cared for and valued. To not feel insignificant when you’re at your most vulnerable.

What I’ve learnt is that patients have been my best teachers, but some of my lessons have been painful.

I  have learnt from their  incredibly life affirming stories of hope, humor, achievement and tragedy and heartbreak. There was a woman whose volunteer hospital transport driver turned out to be her long-lost niece – found and reunited together through daily drives to & from radiotherapy treatment. I’ve treated gold-medal winners from the Olympics 50 years ago, pilots, magazine publishers. I’ve seen people go home and back with nothing but the clothes on their back- for 7 weeks, heard stories of amazing neighbours and learnt a lot about people’s pets. I’ve heard horrific stories that just needed to be told and heard – of death, loss, and abuse. Every day is a day where I take at least someone home in my head. Some fade away, eventually. Though 3 years on – there’s some patients who are etched onto my mind and I don’t know why some really stay with you.  I stopped checking up on them post-treatment because quite a few have died since- and it makes me feel incredibly sad. These people who we often just shared 2 or 3 weeks together at 10 mins + at a time become significant to me. And  I hope I never loose this into qualification.

 

It will be weird not being with #teamleeds, every day; My friends who we’ve gone through and seen a lot together. These stories bound us together. They’re like brothers and sisters now. I imagine this is kind of how joining the army feels, but instead it’s a healthcare course.  It will be weird not joining in on a random Facebook conversation, not having to panic about the endless deadlines and  unclear learning objectives. My closest friends (most of them younger than me) on the course have taught me a lot about growing up. I’ve managed to have a second ‘coming of age’ experience through being good friends in their journey. We’ve travelled when we could together, hosted parties and feasts of food. Shared and supported each other through tragedies, deadlines, successes and the crazy profound things life throws at you. I am completely in awe of these now 21 year olds who are mature before their years. And I think about how their strength is true testament to how I’ve managed to get here – 3 years on. At the beginning of the course, we said that we would drag each other through to the very bittersweet end. And here we are, 3 weeks to go, still dragging each other. I’m pretty sure I wouldn’t be here now if it wasn’t for them, egging us on.

Then there is the staff at the place where I’ve trained, they have been incredible. They’re passionate about education and patient care and safety. They love radiotherapy. They’ve shown me time, enthusiasm and exactly what being a compassionate healthcare professional should look like. I’ve learnt how to ask questions, without being too leading. I’ve learnt to hear for things not actually said, but implied, by patients so that I know if they need more extra support. I feel incredibly indebted to them for their knowledge and time (and patience!). I hope that we stay friends at the end because they’re such great fun people. And I can’t thank my tutors enough for all of their guidance and knowledge in helping me shape me as a healthcare professional!

What I’ve learnt in my Healthcare education (both officially and as a patient) is that everyone in the NHS has a reason to do what they do: It’s almost never about money or our quality of life. It’s because we can make a difference. All any of us ever want to do is to make other people’s lives better. Sometimes it’s life-changing, sometimes it’s something much simpler.

Sometimes things don’t work the way we should. The system isn’t perfect. Neither are the people in it. But it is fundamentally decent and good and whole. That’s why I am absolutely committed to the principles, to the ideals of the NHS. I think it’s just about the best thing this country has ever achieved. It is remarkably robust, but the pressures facing it are immense, and there are few easy solutions. But we – the people of the NHS – ALL STAFF- are absolutely committed to it.

What I’ll always remember from my education in radiotherapy – and that crazy 3 years of unpaid labour – will be the stories that made these people into NHS.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  I’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

Life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And life can be incredibly short. So see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

Thank you to the whole of the NHS for your love, and kindness, and education. It turns out studying Radiotherapy turned out to be WAY more than just a degree at the end. 

I have learnt, through pain,  that I am more than my pain, more than what was built & burned, more than all I’ve lost. You will get to build again. And if you’re lucky, you’ll get to share this adventure with the people who’ve helped you.   Remember it ain’t always about where you start, but it’s about where you’re going and end up.

To the last 3 weeks!

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0-5.jpg *Hope I pass!*

 

 

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

Iroha-Midori.jpg

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!

“It’s called a hustle, sweetheart.” The resolutely difficult advice to follow.

To celebrate getting a PhD scholarship, I did what any normal adult would do. I went straight to the movies (one of my favourite things to do) and went to see Zootopia (or Zootropolis as it’s called in the UK).  YOLO.

During the movie, it became clear why I had been patiently awaiting the release of this movie.

The film takes place in the vibrant, diverse world of Zootopia, a place where predators and prey live together in harmony, and are free to be whoever and whatever they want to be. These reasons are precisely why the land attracts Judy Hopps, a small bunny with dreams of being a police officer. Living on a farm, her parents fear this because, not only has a bunny never become a police officer, but they feel Judy should confine her aspirations to selling carrots on the family farm because that’s what is expected of her by society, something Judy has no interest in doing.

After successfully – but through hardship – completing police training, Judy is thrust into the force alongside other, more muscled animals such as rhinoceroses, rams, bulls, and elephants. Oh my.

Judy’s boss, Chief Bogo , a buffalo, forces her to be a “metermaid” while the other animals take on the bigger crimes, specifically a case involving fourteen missing predators. Judy tries to show herself by issuing over two-hundred citations in just a couple of hours, but to no avail, as Chief Bogo wants to make sure she knows her place on the Zootopia police force. When Judy winds up catching a weasel after robbing a store, she is just about to be fired when Chief Bogo tasks her with finding a local otter who has been missing for over a week. If she can find the otter in forty-eight hours or less, she can keep her job, but if she doesn’t, she’ll be forced to resign. Judy enlists in the help of Nick Wilde, a fox, one of the most looked-down-upon predators in Zootopia, who has been doing number of odd jobs since he was young, after blackmailing him in order to get him to cooperate. Together, the two work to find the otter, but in turn, discover something bigger. Oh my.

As you can probably tell, this is a film about both racism and sexism and underlying that – social-class (my favourite chip-on-my shoulder)  & how fear creates hate. Screenwriters Jared Bush and Paul Johnston carefully construct a world, predicated upon a particular dream, and within that world, populate it with a variety of characters, some labeled as normative, others quietly labeled as the enemy that many are waiting to step out of line. Bush and Johnston pen Zootopia carefully, but bluntly, to the point where you can’t ignore its profound, but simple message of inclusion and acceptance of peers. Oh my.

But on top of this, is the message about not giving up on your dreams, pushing boundaries and always attempting – no matter how hard it seems – to make the world a better place, no matter how small that thing is. Don’t let society dictate to you what they think you should be doing, if that’s what you really want. Always fight against the status quo.

I love movies with messages like this. Like Eddie The Eagle, who constantly shows us – it’s not about the triumph in life, it’s about the struggle. It’s about doing what you love, and not giving up in the face of immense adversity. Eddie The Eagle is another movie that shows the  working class character (based on truth this time) stick 2 fingers up (metaphorically, through determination) at the elitism of Great Britain Olympics Committee and whilst doesn’t win any medals, he wins a place in our hearts because he amplifies what it means to keep going.

Part of me sees my life narrative reflected in these hollywood-poetic license stories.  I think sometimes people think I’m exaggerating what I’ve been through in my life. From homelessness, domestic violence, i’ve had to be a carer, i’ve done some amazing travel, endured crazy poverty, the amount of jobs i’ve had to work to make ends meet or to do what others just naturally have the opportunity to do, life-altering (chronic) illness, terrible accidents (mostly on bike), fires, ect, ect. It’s all true. The good shadows the bad, but the bad has been pretty horrific – and I know many people from my background are enduring much worse. And society allows for this to happen, or to continue the unfairness that propels it further, or makes it difficult to get out of.

It gives me this weird -bittersweet – perspective of the world. I have my weight in empathy and in understanding how exploited and unfair and socially unjust our society is & how all the structures are generated to helping middle class and beyond people success, whilst discriminate those with less and working-class & below..  I think this kind of understanding probably only becomes so cemented when you experience life from the other side. Or see how your friends on the other side live.

I’m grateful to be alive,  I’m blessed to have all my friends, I’m just so lucky to have had the opportunities I’ve had and to follow what I love (art) & people pay me to do it for them & for the support I’ve had along the way & currently on this journey. I’ve visited many countries now because my university education allowed me a passport to see the world and work in different cultures.

 And literally, 17 year old smizz, or even current Smizz,  would never ever, ever, ever really  would believe i’d be here.

I’ve always felt a bit kind of behind everyone else, you know – in everything – art, radiotherapy, academia, life. Like a bit of an outsider, and a bit stupid. I’ve always had this chip-on my shoulder about the background I’ve come from & everything I’ve had to do to get where I am compared to a lot of my friends and peers. That i’m not as articulate, as likeable & as quick as others,  and I was worried I wouldn’t be able to compete. The world loves talent – but pays in character. And I kind of have neither.

And so it felt fitting, to celebrate my next chapter watching Zootopia. And Eddie the Eagle.  It reminds me that to “succeed”, we have to take risks.

We have to take bold leaps and move forward, brave and scared shitless at the same time. We will undoubtedly fall flat on our face. It happens. But we learn, make adjustments and not fall as hard or as far the next time.

But when we fail to trust ourselves to take that leap in the first place—that’s the real problem. It becomes an excuse to indulge our fear: to believe that we are not in fact talented or worthy enough— to believe that our crappy yet comfortable circumstances should win. This particular lack of momentum is called “Business As Usual” and it can continually crush our plans for greatness.

We don’t fail by falling. We only fail when we stop taking the leap. The idea is from Rumi’s observation, “Birds make great sky-circles of their freedom. How do they learn it?
They fall and falling, they’re given wings.”

Keep going. Keep jumping, keep falling. Don’t let others, or society imply, what you should be doing and how to do it.

I’ll try and remember this too.

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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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It takes more than biology to be a mom.

Today is mothers day in the UK. I know it’s actually quite a tough time out there for all the people who, sadly,  no longer have their moms in their lives, and all those people who have difficult relationships with their moms currently.

I know the latter feeling, but on fathers day instead. When I was younger, I’d get kind of jealous of people who had these amazing and supportive relationships with their fathers. For me, the first 14 years of my life – my relationship with my father was an extremely strained one. He either wasn’t there at all and when he was, he was a complete dick. He was abusive and an alcoholic. He made my mom, bro and i homeless when I was 15. And I always felt like it was my fault that he didn’t love me.  When I was 19, he tried to make up for his errors, he got in touch after 4 years of disappearing – and I decided to give him a chance, because that’s the buddhist way – but you maybe able to forgive but you can’t forget. Or you can forget but you can’t forgive. I’m not sure which catogry I put myself in.  He’s better than he was before, but maybe that’s because we don’t see each other, but he still has his drinking and his mean side which comes out when he only ever calls me when he’s drunk. Now I’m older, I realized I didn’t need him anyways.

I tell you all this because anyone can be a mother or a father – but it takes more than biology to be a mom or dad.  Whilst I never really had a ‘dad’, I had many people in my life that stepped up and became like a father-role model in my life, and did more than my real father ever did. Although, it takes time for me to trust any man in my life now.

But my mom was both my mom & dad. She was there for everything. She was my rock. She taught me how to fix lights and plugs. She taught me how to cook. She was the person at parents evening, she was the one who saw me off to prom, she gave me boy advise, and bought me my first alcohol underage (working class doncaster parenting). She was the one who would ground me. She was the one who worked 2 jobs to pay the rent. She was the one who has supported my decisions through not 1 but 2 degrees. She’s the one who has moved me between 100’s of university housing, she’s the one who tells me to follow my heart, and never ever tells me to do something because that’s what societally expected of me. Like saving up for flights rather than houses. She’s brought me up to believe in who I am, to never change, to feel safe in trying new things & taking chances because even if I fail she will be there to catch me when I fall and loose everything. And I know this because she was there when I lost everything. When I fell really poorly.

Getting sick was really shit. I couldn’t get out of bed. I couldn’t even watch bbc iplayer.  This though, just made our relationship stronger. She’s been with me every step of the way. She let me off with rent, she tries to cook my favourite dishes to get me to come back home on weekends. She understood why I needed to go into healthcare. She told me to apply for the PhD instead of encouraging a radiotherapy job – because she knows deep down that actually that would probably make me more happy. Getting to combine both of my loves: art and healthcare. Now i feel blessed and grateful for every single extra day that we get together. I never take for granted the time we get alotted, and i know that if i could follow her in her kindness, giving, and work-ethic – i would become a better person.

But the crazy thing is, they say it takes a village to raise a child. And it does. We may only ever have one ‘mom’, but we actually have a lot of moms in our lives. These are the people , our friends, who live 1000’s of miles away who happen to be someone elses mom – but they’re the next person you tell your good news to: like getting your degree, or getting an interview. They’re your friends who when you’re going through a tough time offer to do your washing, or shopping. They’re your friends who pick you up at the hospital. Who send you texts/tweets to see how you’re doing. They’re the professional friends who help you apply for the things you need/want, and take a chance on you, see something in you, and put their neck on the line to help you. Who forgive you when you do something stupid. Who offer their home to you. All of these, asking for nothing in return.

Because that’s what moms do. They give selflessly, make time, not doing something for themselves but for you instead – and they want or ask for nothing in return. So in a way, our good friends are also some of the best moms in our lives.

I’m the person who I am today, because my mom has taught me to be kind, be gentle, be true to yourself. When I felt like I might be dying, all I could think of was my mom. I thought you know, I’ve had this amazing life. And my mom made sure it could be the best it could be despite the horrific poverty and domestic violence we found ourselves in.  We now both know, intrinistictly that nothing is certain, everything is up in the air, and our time is limited – so we never take anything for granted and we both encourage each other to YOLO. regularly.

Sometimes people tell me they think I’m independent. But actually this is just something my mom has taught me because she’s one of the most strongest, courageous, and incredibly giving, resourceful and resilient people I’ve ever met. And without her I would be truly lost. I love you mom, and I am forever grateful for every minute we get together and for all the sacrifices you give us.

Happy mothers day to all the amazing moms our there, whether its our real mom, or  our friends who fill in those motherly roles from time to time.

Thanks for understanding my heart. It means so much to me. Big shout out to all the work and chances you give us all.

For those who find today difficult, you’re not alone. I’m here 🙂

Much love,

Your friend, smizz x

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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.

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