Time & Vunerability

I have written a lot over the years, and especially in 2016, about fear and sickness, and the force for good that can come from being dealt a hand of crappy cards.

Over the past year and a bit, my right foot has been hurting. I put it down to standing on my tip-toes on clinical placement (too small to move patients- should really get the step out! – so my own fault), creating a planta facisa like thing. I had an injection which stopped the pain for like 2-3 months. I was happy. Glad it was just a normal thing, and nothing complex like I usually seem to rock up with at the doctors.

And then it started to seep slowly back. Every morning when I got out of bed, I could barely walk for the first few minutes. I ignored it. I was no longer on clinical practice, for months, and yet it was getting worse. But never mind, I was in America. I was sure it would go away soon. I never even really looked at my foot though, as I thought all I needed was another injection when I got back home to the UK.

Then when I was kayaking across the pacific ocean in Hawaii – my bad kayaking skills got Gemma and I hit by a massive surf wave as we nearly arrived at the shore of the beach. I don’t know what I hit my foot on, but when I did I got this soaring pain. I limped out of the kayak, holding my breath to try and take the edge off.  Days later when my foot felt no better, I inspected my foot – and noticed a medium sized mass in the center of my soul and up to my ankle . I thought about googling it – but I was in america… what good would that do? So I shrugged it off. And thought it was probably Kayaking swelling. I continued to limp across the West Coast and from Gatwick to home, and beyond.

My GP – always a believer in not doing something without proof said he’d rather not do anything until he knew what was wrong, referred me for a scan of my foot. It took a month for the letter with my appointment time on  – which was the night before my flight back to Boston/NYC for a week.  I went, had the scan and the radiographer told me there and then that there was something on it that I had to go back to the doctor straight away because “that’s what doctors do”. I was like, “is it a tear?” He was like – “maybe – or maybe fibromatosis.” I sat up and looked at the screen and instantly could see the deep shadow on my foot – that radiological training, yo. Since I was flying the next day, I decided to do what I do best – just ignore this pathology and go on as normal. The radiographer told me it was necessary to see the doctor asap, and that I shouldn’t go running at all. I arrived back home a week + later to an appointment to see a specialist.

I left, and of course, googled Fibromatosis and looked at scans of feet to compare what I had seen. I have come to the conclusion that it’s not much to worry about in the great scheme of things, but elements of concern remain never the less – like if it is this – how will I ever be pain free in my foot again?  And now every morning when I get up, is a reminder of this pathology existing in my foot as it hurts to walk.

I am forced to look upon myself, once again, with a harsh and urgent clarity.

In 2012 I was forced to become essentially aware of my mortality, and of what I wished and wanted for my life, however short it might be, priorities and omissions became strongly etched in a merciless light and what i had most regretted were my silences.  Of what had I ever been afraid of, and opportunities not taken?

I’m aware now that my visions of a future have been honed by the lessons of my limitations – such as the never ending fatigue & headache. But I think it’s really important to give an honest and vulnerable account of what it’s like to deal with our hardships, if we are indeed going to share them.

There was a BBC article recently saying being on social-media can make you sad – because a lot of people, often,  portray a life of sunshine and rainbows, myself included. Sharing celebrations but not their failures. Showing an easier path, perhaps. Or shining glory in the face of adversity, leaving you the viewer – feeling less of a person because in the same adversity you crumbled, whilst they stand up shining and strong. When in reality, both parties struggled and both are victorious in being able to work through the challenge at hand. It’s just curated in a different way. Now I’m not saying we shouldn’t share our celebrations – but isn’t it much richer when we know the losses and insights gained & gathered in that process? It’s often a 2 -way journey too. I know I wouldn’t be where I am without help.

I feel like I have been open  throughout the years of my experiences. But I do often not share my feelings fully. I often don’t really tell people what ‘s going on, or what I’m going through, or weird things that’s happening to my body because — well, you know the other person probably won’t know how to react, or when there’s no proper finishing line it’s hard, or you’re not really looking for sympathy.   But often when I do take a leap and share what’s happening, there’s a huge sense of relief. Like, almost that my pain has been validated because another person knows about it – so it therefore is way more real than it just existing in my body or in my situation.

Through time, I am slowly learning to live beyond fear by living through it, and in the process learning to turn the fury at my own limitations into some more creative energy.  Living a self-conscious life under the pressure of time is enough to leave a mark upon alot of my life’s decisions and actions.  And it doesn’t matter whether my death comes next week or in 30 years from now; this consciousness gives my life another breadth. It helps shape everything: from the ways I want to love, to my politics, to my work to the depth of my appreciation of living.

I would be lying if I did not also speak of loss. The lessons of 2016, and beyond, have provided myself with many (hard) lessons and questions.  Such as, how do I provide myself with the best physical and spiritual nourishment? How do I give voice to my quests so that others can take what they need from my experiences? How do my experiences fit into a larger tapestry of my work as a working-class woman working across multiple disciplines as an artist? And most of all, how do i fight the despair born out of my fear, and powerlessness — imposter syndrome — self doubt — my meaning(less) life — which is often my greatest internal enemy?

What I’m learning, and wanting to take forwards into 2017, is that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces alighed against us.  This is important as we begin to sail uncharted and ferocious seas of many conflicts and unknowningness ahead- both politically and personally: and physically, philosophically and socially.

When I reflect through all of this, it is the concern and caring of all those in my life which have given me strength. We should share our experiences – all of them, the bad, good and ugly , (only if you want to share of course) and spread words that are meaningful to us. It is necessary to teach by living and speaking our truths which we believe and know beyond understanding. We have lived through all of this already, in silence, mostly.  But we can learn to work and speak when we are afraid in the same way we have learnt to speak and work when we are tired.

I want in 2017, for us to be brave, see beyond our fears – whatever they maybe – and to break our silences with kindness and compassion – for those around us, but also for ourselves. We can challenge hateful assumptions, we can begin to understand others fears, we can work together to try and bring small solutions to never-ending problems and crisis. But it will be because we became unified. Because we understand that essentially we are all fragile, and all human.

It will be a big task, because there are many silences to be broken. But I know that together we can do it.

So lets share our vulnerability, lets assess our fears and dreams, lets help each other up.

Don’t wait to be asked if you need help, because I’m already here and you’re already being beckoned.

In the depth of winter, I found there was, within me, an invincible summer.And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger — something better, pushing right back.” — Albert Camus

 

Help Aleppo Smizz Print: Lets Be Kind Again

I’ve been watching the tragedy of Aleppo for months and months now. Slowly, and slowly getting more and more, and even more horrific. I never thought that in 2016 we would be looking at the world through fear like we are now – a world seemingly well connected, a whole history to show us how it will never pan-out well for either side. But here we are.

I read article after article about the genocide that is happening. And I feel incredibly powerless. I know we all have stuff going on in our lives – like trying to make one pay check make it to the end of the month, being sick or looking after a sick loved one, wondering if we’re going to have a job by the end of the year… etc. And these are no small-feats. But I sit and look around my room, at my mom and my dogs, I look at my Facebook messages with my bro, and i look at the christmas tree with it’s sparkling lights. I think how lucky we must be to not live in that kind of fear (or at least yet.. who knows what the future holds at the moment).

And I can’t just watch the world burn in horror without trying to do something. However my skillset is small. And my debts are massive. Since we raised around £1000 for Doncaster Detection Trust this year, I figured maybe another drawing could do the trick to help raise the money and the funding to get the help that the people of Aleppo so desperately need.

So here’s my first print. They are all limited edition of 100, signed.

A4 in size, printed in matt. On heavy 220gm paper.

They will be posted to you after christmas.

Starting donation at just £5. All money I will split equally between The White Helmets and Doctors Without Borders/MSF 

Make the £5 (or more) donation to Paypal. PLEASE ADD £1.50 to cover postage too – unless your donation is over £15. I will cover the postage costs for you for your IMMENSE generosity.

DONATION HERE:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=SWMGL3DWTSVPQ

Email me if you have any issues or questions! smizz@sarahsmizz.com

Thank you for taking the time to look, and even more MASSIVE thanks to everyone who has already donated to get this print.

Lets Be Kind Again (we can be the change!)

(More prints coming soon too)

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What endures, what lingers, and what gets washed away?

It’s been a whole year since the last Thanksgiving, already. I know, Thanksgiving as a Brit living England is technically not my holiday. However, I wish we had something similar in the UK. Like, I dunno, a Kindness-Day – a national holiday where everyone gets the day off & it’s a reason to take the time to be with those who matter to you, to think about  what we have & help others out – without it having to be related to some underlying pilgrim genocide, or unrelentless capitalism. But you know, a time to take in & be present for all the small things. Because the small things are the things that probably matter the most. And you guys have given me the bestest small moments this past year.

I started to pen this post in my head, slow walking home through a freezing fog through the quiet neon light of Sheffield city streets. I do like evening walks like that, just listening to christmas-jazz music.  But it’s also made me realize something about Sheffield that I love. I love how Sheffield’s meteorology is an excercise in whims and micro climates. I can see how Sheffield has become a city for rebels, artists, hackers, nerds, runners and hikers.  It often feels like we are not on the same schedule as everyone else. Time passes in a non-narrative mish-mosh of second winters, monsoons and fourth indian summers, calendar dates be damned. Ney, all this can happen in just one day! Those small things.

2016 has been insanely kind to me, especially work wise. And you were all very kind to me too. I got to draw some amazing things,  people and talks. Stories. And I graduated with multiple prizes and awards – when I didn’t think I’d even finish the course. 

My medical ‘journey’ started making me think more about how narrative helps us all be more compassionate & empowered (if you’re telling the story)… How empathy is first an act of imagination. An illness is not merely a set of signs & symptoms – it is the story in which it is told that gives us the necessary clues of what needs to be done. What kind of support this person is looking for, how it is affecting their quality of life & ultimately what tests/treatments need to be done/undertaken. The thing is, it’s often the smaller things in a healthcare pathway which makes the most personal difference.

It made me realise  how I can never be certain of anything. We are made from our experiences – our failures & successes, our loves & dislikes, what we have witnessed; gentle creatures that get hardened by tragedy. I walk through streets, sit on the bus, in hospital waiting rooms and cafes and think about these people who surround me, I wonder what their stories are. 

Because I often find it hard to concentrate these days due to unruly fatigue, brain-fog or just general overwhelming pain on top of deadlines  – I’ve spent a crazy amount of time online & reading books trying to find a cheat to trick me into being more productive & waste less time. Ultimately – I’d like to gain more time so I don’t have to carry the guilt of not working as fast as I used to do.

But all i’ve learnt from this is that we are never-ever-satisfied. Life coaches think they’ve figured out the secret – to delete all your apps on your phone. Bullshit. Just turn it off!  #firstworldproblems. We await bigger phone screens, & watches that do the same as our phones  and complain about things that are arbitatory. I too am guilty of this. 

 But it’s all just more proof of us not enjoying our smaller things.

Robin Sloan in his book Mr Penumbra’s 24-Hour Bookstore writes about this idea that basically you write a book, a “Book of Life”, that represents everything you have learnt in your life. You work on drafts your entire life and it gets stored and read by a privileged few upon your death. Our lives are filled with a desire to know the universe, and to be known. To leave a dent. 

To not be forgotten (my own fear).

As time becomes more valued to me as I know how quickly it can be erased, I started thinking about “quality time”. And its role as the primary means to an end for a fulfilled life. This quality time should be with our own selves, with our interests, and with those people we connect deeply with. They each feed into each other, without one – the others become disconnected. Quality Time makes extremely clear that those smaller things become some of the most important moments in your life. Be present for them, but that’s not easy. Cultivating quality time means attempting to remove circumstances that hinder quality time, and not all of us have that luxury. 

I am learning to be wild again.  Next week I head back to the U.S.A. again!

I truly believe one of the keys to happiness is to build meaningful ways to make a living whilst working on something you wholeheartedly give a shit about — with good human beings who you give a really big shit about.

In each of our lives, things have changed, for better and for worse. Change and struggle is part of our every day. Becoming and being a parent, as many of you are, is a struggle. Starting a new course, job, moving house, starting a new relationship is all full of struggle. But it makes us better, in some small shape or form.

Being sick reminds me that whilst we might understand the surface of things, deep down there is unprecedented amounts of uncertainty that we have no idea of. All I know is that this Thanksgiving I am happy and thankful for the smaller things. The ability to hold a conversation, the ability to write a blog post, to have so many amazing friends dotted around the world that I can see  any time or throughout  the years. I get to travel. I get to try and make a difference. I get to draw and learn for my job. I get to hear your story. I get to call you my friends. And i have shelter, and warmth and food (most of the time). 

I believe that whilst our trauma’s may linger, kindness & friendship is the thing that helps us endure. 

You guys have made my year. I hope that together – we can continue to give just small pieces of everyday kindness to both loved ones, friends and strangers. 

So this Thanksgiving, I ask you: What endures, what lingers, and what gets washed away?

 

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If you think you can’t do something, I think you can.

All my life I’ve felt like people say that I can’t really do stuff. And sometimes it’s said not in a direct way, but through specific actions.  And then I wonder, who are  these people to tell us we can’t achieve something? What’s it to them?

I never was guided to go to university until very late on in the game. I never knew about league tables, I kind of had no real concept of what university was – I knew no one in my life who had been. It was like a foreign concept. I accidentally attended 6th form as a way to avoid full-time work (I worked 2 part-time jobs during my A-Levels instead), it was here that I started to keep the university prospectus shelfs in the 6th form block up to date and in the right place for others to use and inspire. I ordered every single prospectus from across the UK. I remember to this day all the different kind of designs they came in. I’d look at pages of these dreams and hopes like a kid might look at Disney World travel brochure. My teachers encouraged me to apply.

In fact, I used to look at Virgin Atlantic travel brochures too with admiration and fascination. I remembered how I would look at my favourite brouchure regularly and feel like a sensation at wondering just how downtown Vegas and all those millions of lightbulbs would look like. I would close my eyes and will myself to figure what San Francisco would feel and look like blending these pages of travel brochures and movies . It was literally  a million miles away from my only ever been to Doncaster lived life.

I was told that it probably wouldn’t be possible to ever go there. Because, well, we’d never be able to afford it. It was deemed too ambitious – and what exactly would I even DO there?

I’ve now been to San Fran 5 times so far.

I somehow got to university to study fine art, without a foundation degree. I was the youngest in my year. I remember my interviewer at SHU asking me, “why do YOU think YOU can come to university without a foundation degree whilst everyone else has got one?” And my answer was… “Because I’m a Marxist”. I still cringe. But it did the trick. I told him in one sentence that what I lack in technical experience from a foundation degree, I make up in theory and self-sufficient ideas. Very SHU, really.

I went to work at summer camp after my first year of Uni, to work there & use the money from that job to achieve my american travel dreams that I had spent the past 10 years looking at. Here I realized that American kids are taught to believe that can achieve ANYTHING. They can be president if they so wished.  Us Brits? Don’t be ridiculous.

I have wondered about that part of our culture a lot.

Here all my friends were going to be applying for real internships next summer.

In my second year I wanted to start a gallery out of my living room, and my lecturer at the time told me that it would be too much work and I’d never do it.  I applied for an internship at MoMA – knowing fine well that i’d never in a million years get accepted, but it was a great excerise and I used my tutorial with the professor at the time to see if I could name drop him on another NY Gallery application.

I found the bestest people in my life, Postmasters. Who took a chance on a Smizz.

I was so inspired that summer after working there, that I started a bunch of iconic and life changing projects in Sheffield – Including CAKE artspace, which was a small room above a cool bar on West Street. We did so many cool projects over the 2 years we existed. Take-that my 2nd year lecturer who said I couldn’t do it.

I worked in art & political institutions across Chicago, and then mashed my BA & MA up together and graduated with my Masters in Fine art.

I graduated and I failed at getting most opportunities, but I kept on trying. In the meantime I took on jobs to make ends meet – and in these jobs – like Waterstones, I made some of my closest & giving friends. I learnt lots about bookselling and about publishing. I worked on 100’s of projects and started making a name for myself as a live-illustrator. I also used this time to re-connect with my friends and family.

I had to drown out, constantly, people telling me in so many different ways to give up – or that it’ll never happen for me. I even, at times, fell into the trap and would believe the self-doubt, I would wollow in self-pity. But i’d slowly pick myself up and dust off my trousers and start looking for opportunities again – with a lot of help and guidance from friends already in the art game.

I slowly started getting artist residencies in iconic galleries, and travelling the UK for drawing work. The working class kid from the Donx, making it as an emerging artist. Who would have ever believed it? Not me, that’s for sure. And not the people who believe you can never get work from art.

Then I fell sick. And I was rock bottom again.

All of my hardwork. Kind of disappeared over night.

People told me to just give up, because – well, who knows if I’ll ever be the same again. If I’ll ever NOT feel extremely tired. I had to let go of my old life. I refused, and it drove me down further.

And in that time I saw those gaps in the  healthcare system. I saw how people held me up when I was limping and at my lowest. I knew then that I wanted to be THAT person. I wanted to try and help lift someone else up. I wanted to help make society a more equal place. You do that through health equality and care. And I just felt, deep down that an artist could do it because I was sensitive to the system and peoples needs – having a very real patient experience myself.

And so I started looking into which area specifically I wanted to go into. And I chose upon radiotherapy & oncology for its continuity of care, my need to know more about oncology and the team working aspect.

When I applied, I had no healthcare working experience and no science A-Levels. Many universities were reluctant to say that I could *even* apply to do it because of no science – But I had a 1st class Masters. I can learn. I’ve proven this. I had more than enough (straight A’s at A Level) UCAS points.

I paid no attention and applied anyways. And i got interviews everywhere I applied. But even in the interview process I was met with reluctance. 1 university (not SHU) said to me, “Don’t take this the wrong way, but you’re not our usual applicant – The NHS is a bit like a conveyer belt – so do you ACTUALLY think you’ll even fit in?”  This threw me, how loaded with judgement and cynicism. I answered, yes I would fit in & much more.

I got offered a place, but SHU was for me. (Cuz I’m SHU until I die, obvs).

Plagued with self-doubt throughout the radiotherapy course, I constantly told myself that I didn’t belong. I had no science background. I was terrible on placement. I had no money. I had my arty habits. I’d think in these weird ways which took me longer to get to the right answer.  I thought that maybe I’d made a miscalculation.  I was sick. I was tired. I was miserable because everytime i didn’t do something right – i’d spend the next 20 mins + doing myself down inside my head – this was a constant cycle for months at a time all day, every week day. This is not the right way to go about it.

It was like I took all the baggage of all the many years of people telling me I couldn’t do something – and built it up into a mirror that I just tormented myself. I never began to believe the hype.

I somehow I got through 2 years of crippling self-doubt. And that was thanks to my friends, and all the supportive staff & people on twitter I had in my life — who thought that I could do it.

I went for my first RT job interview in Jan this year – and they took an instant dislike to me, which is fine. The next day they called to say i never got the job – which was like, duh. I asked for some feedback and they told me that my answers were “really, really good – just TOO detailed. And that they applaud my enthusiasm but they thought I was too ambitious ( which was that my long-term career plans was to enhance patient info by using patient experience [with specific examples] – not too ambitious in my mind)”. Whilst I’m 100% people did way better than me, I felt that that kind of feedback was unhelpful. Another voice just justifying to me my worst fear: that I’d never get a job in radiotherapy because i was too different, that i’m unlikeable, that the exact reason I wanted to go into healthcare to make a difference was seen as too ambitious. That I *couldn’t do that*.

 

Last week I picked up the national student therapy radiography of the year award, I won a bunch of awards for my first ever RT patient info app, I got my research chosen to be shown at the annual radiotherapy conference in Jan next year 

And today I graduated with 4 prizes for: most innovative research project, highest clinical marks, highest clinical and academic marks, and highest mark in PRO 3 (2nd year) module. 

I got my full scholarship to do the craziest PhD ever – combined all of this together — to, you guessed it, try and make a difference. To be ambitious there. (Although I am now riding myself with the same self-doubt and imposter syndrome that I had during my RT degree).

And this all came from people telling me that I couldn’t do it.

So I will take a leaf from this book of lessons.

When you want to make a positive change, whether that’s in the system or for yourself – and people say “you’ll never be able to get a job in that” or “you’ll never get accepted because you don’t have X” or “You’re just too ambitious” or “You haven’t got the right marks” or “That’s not HOW we do it,” Or “it’ll never happen cuz people won’t get it/don’t want it/people higher up won’t invest in it”

Do it anyways, try it. Test it out. It might be wrong. It might take longer than you expected. There might be loads of tears and headaches. Your relationships might be tested. But if you really believe, and you think it’s right. You’ll find a way through the bushes, or hanging across the cliffs. It might not be safe. But you’ll get there or learn something to use in the next move.

As Samuel Beckett says: Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better.

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Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

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(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

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We won the award, friends!

Last week I woke up in San Francisco and looked at my cellphone to see that I had loads of notifications on twitter when I hadn’t really tweeted anything.
I wondered what had happened. When I opened the app, I was overwhelmed and then disbelief took over when I saw that I had won the National SCoR Radiotherapy Student of the Year 2016 award.
I stared at the website at my own name for like 15 minutes, unable to almost recognise it: it middle-named me (Now you all know my middle name – which I don’t like, FYI). So it was strange to see my real full name – not Smizz, not just Sarah Smith. The whole official Passport, birth-certificate name. Official.
I wondered throughout the day whether or not to share the news on Facebook publicly, And I decided I would.

ONLY because I want to dedicate this award to you.

 

To my friends (both course friends & placement friends & twitter friends; friends before this course & my art friends & friends afterwards – ALL my friends), I want to dedicate this award to my lecturers who helped me figure out how to write somewhat scientifically, who tried to give me some confidence & support my ideas; I want to dedicate this to all my Leeds Teaching Hospital Colleagues – who all mentored me and supported me throughout the last 3 years – You guys really showed me what incredible patient care looks like, and supported my energy to make things for patients and students. To my doctors and healthcare professionals who inspired me to get into radiotherapy through their care & kindness towards me & i felt like I needed to give that care & kindness back. And I want to dedicate this to my patients; all who trusted me with their lives, their hopes and their fears. I am humbled.
And most of all, I want to dedicate this to my family: My mom & Bro & nan the most — who support me in what ever crazy road I take and are always there for emotional support and belief.
I’m only here because of y’all.
The reason I feel so incredibly emotional about this award is my journey getting here. After falling really sick & getting told it looked like Lymphoma – something shifted within me.

Everything changed.

 

I had to use this experience – as patient, as artist, as social justice worrier – to make things better for others within the healthcare system and community. Every time I was in the hospital as a patient, the gaps would stare at me. But I also felt this incredible need to give back to the system what it had given me: hope & incredible care (most of the time & eventually).
But I didn’t want people to think I was peacing out of the art world. I was, and still am an artist – first and foremost. So I secretly applied to do my undergraduate in Radiotherapy & Oncology. To give back. When I got accepted to the course (another surprise!), I worried about how I could explain to others what and why I was doing it. I worried about it all the time. And when the day finally came, I convinced myself that I didn’t need to say anything at all. But I was wrong.
Since then I have worried again and often – that I’d given up my art career and I sucked at being a healthcare professional; that I wasn’t smart enough, that I was slow, under confident, that I’d chosen to go into healthcare because you can’t make money in art (the worst), or worse, that I simply did not care about art any more. None of these were true, either.
But, the story is more complicated.
I worked harder at building my art practice than on anything in my life, though it never felt like work. I devoted myself to it, though it never felt like sacrifice. And to my delight, it kind of began to pay off! Until I fell sick. And everything crumbled underneath me. Like my own identity.

I am also endlessly grateful. Those years gifted me experiences, skills, lessons, and friendships. I would not be me without them.

 

My close-friends saw me nearly go under and knew I had some close calls. It took me over a year to regain slight normalcy. Suffering, i tried to get back into the same art-stuff, all my jobs. But my body was still broken.

It is easier than ever (for most) to go to university. But many forget that it’s a rare privilege to find something you care about so deeply and be able to make it your life.

 

I realized I couldn’t have my old life back, but I also kinda didn’t want it anymore.

But I’d kept all this secret for ages. Switching to Radiotherapy WAS HARD.
In art, it’s about a lack of boundaries— complete freedom. failure is a default. It’s ok. You try and test ideas, and adapt – a bit like a PDSA cycle. In healthcare- everything is boundaries, everything is rules (for good reason (mostly)). The work, whilst I was feeling poorly, was heavy – and physically and emotionally labour intensive. The amount of stuff I had to learn from anatomy, to reading CTs, to radiological physics, to NICE guidelines to learning treatment protocols, learning all of the machines & regimes & dose calculations & treatment planning software etc, and what’s right, and how we do it at our local centre was all crazy.

I nearly quit in January 2015.

 

I was in and out of hospital myself. I’d been run over on my bike, I was in a fire. I was in a lot of pain. I cried at work on to my mentors in Sim (i’m really not a crier – esp. publicly). It was so embarrassing. We joke about it all now. But I was close to the edge then.
I didn’t think I was going to make it. I felt like a black sheep. I felt like a failure. I felt so behind my peers. What happens if I screwed up both my art & healthcare opportunities and get left with nothing? I would loose everything. I didn’t even have my health.
But I knew if i could get through it, because that’s the working class artist kid in me, I could make things better for patients and HCP if i got through it.
Through reflection, using my artist sensibility & my yearning to make the patient pathway better & my fellow students life easier – with my time:
I started online revision groups, I went to conferences and delivered papers.
I won student leadership awards.
I made more and more things to help people.
All using everything I had learnt in art and my time in the art world & my experiences from clinical placement and as a patient. Because friends, healthcare needs creativity, kindness, and good design. It kinda needs artists, for sure.
In the end: I graduated with 93% First Class honours. I got a full prestigious scholarship – free ride & $$$ – to pursue my PhD to cement my theory that using artistic practice can help enable better patient information, and re-design things in the oncology system with the user (patient, citizen, HCP) and experience at the centre of it — using their experiences.  Being a hybrid of: clinical radiotherapist and artist and patient in one is absolutely vital to this phenomenological, qualitative research.

When I left America years ago, I was on a plane home because I was dying. I lost that old life, but, I’ve gained a new one, and I am incredibly fortunate for this.

I think the greatest freedom that I’ve gained is the fact that I no longer have to worry about what happens tomorrow, because I’m happy with what I’ve done today.

Winning radiotherapy student of the year makes me feel like maybe all this happened for a reason.  I feel like I might have , maybe, actually helped some people during my training – and this means so much to me than any title, any job, any exhibition.
I’ve lost so much, but I’ve gained so much more.
I don’t know yet what’s next for me, but these past few months I’ve been thinking a lot.

I’ve been thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility pay it forward, thank everyone who got you there & plan for the day that you might not be able to do it.

 

So here I am. I dedicate and want to share this award with YOU
To my placement buddies for all the laughs, the cooking, the tears, the sharing of knowledge, the late night last minute pebble pad sessions & the words of encouragement. To all the staff who helped me to become a qualified radiographer. Who wouldn’t let me put myself down. To showing me what listening and really caring look like, to believing we can change things as healthcare professionals! You know who you are. And you deserve this more than me. Thanks for the belief and hope and love friends! I wouldn’t be here without you all, in every single way possible. I know this is a product of you supporting me, and teaching me, and believing in me. We’re all going through something.

You’re all amazing.

I’ll be taking my Nanna to the ceremony in London. She’ll be so proud, & I’m so happy that I’ll get to take her.
I’m humbled by this. And I wanted to share a bit of my story of why this means so much to me, and for you guys to know I never, ever, take this stuff for granted.
Lots of love, gratitude and shock.
To using my time well & to help others.
THANK YOU ALWAYS
Much love always,
Your friend Smizz.
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Between two spaces.

For a long time Samuel Beckett’s 7 words: “I can’t go on. I’ll go on” has captured the last few years for me. Re-visiting the old habits of my past life has got me re-thinking everything again.

I’m writing on the MegaBus, my transport method of choice for writing. Long delays, bumpy roads, all on a few dollars – seems to represent my life well. And what else is there to do on a MegaBus other than to over think about all that is and all that was and could have been?

I’ve spent the most incredible few days in NYC catching up with friends and being half wanderer and half tourist. Half ticking ‘living-list’ items off, half just literally watching the sun move across the sky – relaxing after an incredibly hard year. But all of this has given me time to reconsider my position. 

I’m now well stuck in between two spaces –  in between sick and fully healthy, in between degrees, in between art & healthcare, in between transit from one place to another. And when I fell sick, I couldn’t get out of bed, I coughed up blood, I was in severe pain, constant heavy nosebleeds, drenching night sweats, loss of sight, black-outs. It was pretty rough. 

And naturally because of this health issue, everything changed. Everything. My art career changed, my future plans had to be re-adjusted, I wasn’t sure if I was the person I wanted to be if everything ended right there. And for the past few years I’ve spent the years re-negoitating with my body, with my own identity, with my left-over abilities from being damaged on where to go and how to use this experience.

The thing is, I’ve used what’s happened to me as fuel for both incredibly good changes in my life, but also i’ve used it as an excuse as to why I haven’t done other things. I mean, I literally couldn’t get up – so I don’t think I should be too hard on myself. But the thing is, whilst I’m still not 100% and I live with a fear in the back of my mind that it all could easily come back as easily as it appeared — I  no longer can hide behind this excuse of having not done a certain amount of things (art & societally wise). And this doubting voice has started to get louder the closer i’ve got to the end of my healthcare course.  

A bit like when an athlete gets injured, they become less valuable. They might even have to retire early – condemned to areas in which their talents do not lie. 

What happens if whilst i’ve taken a bit of hiatus – what it really shows is that I’m actually not a very good artist? I feel so behind my peers in so many different ways now. I’m getting old.   What happens if I’ve de-skilled myself? So many what-ifs, so many worries?  And what does all  of this mean? 

I think I’m starting to feel the importance of my next body of artwork and the vulnerability of that. That and the vulnerability of being stuck in between two spaces and places and trying to coherently string  this broken fragmented life and experiences together. 

It’s been a good few years since I’ve had the luxury to doubt my work. After all, doubting the future is a luxury only lucky people get to do. And it feels like progress to some degree getting to this place. 

On the bus, I spoke to Katie about these worries. She seemed unfathomed by it and compared it to all development.  Bringing direct inspiration from Britney Spears career – how she has her ups and downs. one album is shit, the other is great. Using all the experiences together to move things forward.

She concluded that, “you’re in the present moment, so you live in it. you do what you need to do in that moment.”

I guess I’ll never know if I had never fell poorly, whether or not I’d be a better, more established artist (or a more established practice/body of work). I can only take off my rose-tinted glasses of the past and Push against these two spaces between me. But I do feel in my bones – that i’ve made some important things for others over the past 2 years, even if the art world canon will never recogonize it. 

However, i’m hoping to spend the next 2 + months finding my artist voice again. Re-building the existing foundation to strengthen my critical art world voice. I’m not sure at all what will come next – but I know what my works NOT going to be – and I know, for sure, that I’m going to use all of my time, and use it all wisely.  

I can’t go on. I’ll go on.

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This is a wonderful way to think about friendship

“the only trick of friendship, I think, is to find people who are better than you are—not smarter, not cooler, but kinder, and more generous, and more forgiving—and then to appreciate them for what they can teach you, and to try to listen to them when they tell you something about yourself, no matter how bad—or good—it might be, and to trust them, which is the hardest thing of all.”

— Hanya Yanagihara,  A Little Life 

This is a beautiful book, but a devastating read. Proceed with caution, feint of heart.

Adventures Ahead: The Lake Moon

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I got my 6th USA work visa approved on Thursday in London and now I can allow my trip to feel real.

It’s been 3 years since I had the real freedom to leave the UK for a long-ish period of time. I’ve been pretty poorly in-general and then clinical placement or school work and money had been other reasons. But I’ve pined for this opportunity again.

When I left America in 2013, it was with a heavy heart – I didn’t know if or when I’d be coming back. And I certainly believed that I wouldn’t be coming back to work, maybe only for a small holiday – if I was lucky. In fact, every summer I get to see feels like a blessing.

Last year when we got to do our clinical elective in Canada and Boston last year, I felt what I had been missing.

For the past 3 years I’ve wandered the streets of Leeds on sunny days and closed my eyes and willed myself to think I’m back in New York. The sun, the heat, the buildings when you look up towards the sky, people pushing past you and back to back traffic in the city center is enough to trick yourself that you could be in NYC. I go to the movies and the smell of popcorn and coffee makes me feel like i could still be in NYC. Sometimes I hunt down all the food I love to drink and eat whilst in the USA to try and muster that same feeling; thai-tea, pangang curries, guc, chips, salsa and good tacos. But they’re all weak immitations.

I frequently have dreams of just walking around NYC and they’re freakishly real.

So I decided, last year, whether I could afford it or not – that I would work really hard to get to spend my last summer there. In the place where I was broken and found. A place where it made me believe in myself, showed me the kindness of strangers – people who I had only worked with whipped around & paid for my medical bills, and treated me like I was part of their families. The country with many people who have helped me believe that I can be and am an artist. Who completely inspire me with their unwavering work ethic.

Just like Barack, all my life, I have been stitching together a family, through stories or memories or friends or ideas. And these guys helped me put it all together and made my stitching stronger.

But now it’s all real, all pretty much official. I’m going back.

I’ve had many years thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility to plan for the day when you can’t do it anymore. And it’s been hard.

I leave Leeds in 3 weeks. I arrive in NYC on the 17th June. We’re going to go to catch-up with amazing friends, go to art-openings, find the best bagel (still not managed it!), eat the best cheesecake on the beach, ride the Wonder Wheel, I’m going to draw, drink those favourite drinks of mine, sit in Williamsburg and complain how gentrified it’s getting, look over the city from roof-top bars and watch the sunset over the East River. I’ll wonder the streets at night, trying to take it all in – so I can continue to close my eyes and take myself back there when i need it the most.

Then we leave the crazy bustle of the city to  go a place that’s pretty cut off from the world. Basically no internet. No public transport once you get off the island by boat. We’ll arrive at Sandy Island – an island in the middle of a beautiful lake surrounded by mountains and tress/forests in New Hampshire. This will be home til September.  The moon sets bigger than my head here. Deer and bear roam, and you can fish or chuck pebbles into the lake from the sandy beach.  And you can lay on the baseball field and watch the milky-way & countless shooting stars. It’s pretty magical. It’s a good place to try and figure things out, to learn how to reconnect with people without having technology blare out for attention at you. You can literally leave the ‘real world’ behind.

We’ll then leave New Hampshire for a quick stop in NYC and then to San Francisco, CA.  I’m excited to run up the hills and skate down them. We’ll make fires on the beach and eat pizza whilst the sunsets. From here we’re going to Napa-valley, CA – drink some wine whilst paddling in fresh water in fields of vineyards whilst the sun sets. And go hiking in Yosemite, CA.  We’ll go back to fly out to Maui, Hawaii (a state I’ve yet to tick off my ‘life-list’ – making it 43 states I’ve visited!). Here we’re renting an apartment on the beach with turtles. I’ll hunt down the best acai-bowls to eat, and we’re going to hike some volcanos, surf and relax on the beach after the relentless work this past 3 years has taken.

Then we’re flying back the Seattle, WA – I’ll be re-connecting with some of my friends who are artists working on really cool social projects. And We’re taking the training to Vancouver, Canada – then back home!

And I CAN NOT WAIT. 

I’ll be chipping away at my bucket list – now re-named ‘the life-list’, making art, helping people with their projects, writing, taking photos, and working on myself, helping others. I’ve a million ideas for new projects, but I’m trying my best not to start anything. For a little while, at least.

Follow along if you like!
Life can seem so challenging sometimes. It’s a scramble up a rocky cliff that feels like it’s two grabs away from a landslide. But we’re not meant to do it alone. And we don’t have to do it all at once. Take time to take care of yourself and look back to see just how far you’ve come

“Time is space. You are moving through that galaxy. Wait for the stars.” – Matt Haig

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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:

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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!