A long view of time can replenish our sense of ourselves and the world.

A long view of time can replenish our sense of ourselves and the world.

I’ve been thinking about it for weeks. Every so often when campers know I’ve been pretty poorly over the past few years, they ask me how everything is. I reply with that it’s the most “normal” I’ve felt in 3-4 years.
But it got me thinking: on Returning to Normalcy … What Does that Even Mean?
The last time i worked at Sandy Island, properly, My life was in a state of mental whiplash and I barely even realized it. In barely a few years I’ve gone from being in a death spiral to staying up super late drinking wine with friends, climbing icelandic waterfalls, running for late buses. I went from planning out my funeral to doing radiation oncology and beginning to start a PhD. I’ve gone from thinking I’d never step foot at Sandy Island again, to working my longest summer contract here.
But it’s taken me to get to this summer to look back to see just how far I have come, compared to even just last year. Even in January this year. Even April.
Before going further I have to share how profoundly grateful I am to everyone. I can’t even write these words without gushing tears.
So the thought of a return to normalcy is like a warm embrace: to feel like the last few years were a mere aberration that has been rectified. I can’t explain the joy I got when my brain could feel bored and my body wanted to live again. I have about 4–6 hours a day that feel like they did before. The thought of getting to blend my social passions with community and art and social change immediately sets me to problem solving and creating again. Or the thought of unlocking a new meaningful lifestyle that I can plan for has me losing sleep piecing it together while I should be sleeping. I tweeted the other day that I’m already overwhelmed by the projects I’d like to work on now. It made me so happy to tweet it, to feel like I could be back to normal.
But how can I expect life to be normal? I’m still on a small doses of medications to help with everything from pain, to swelling, to hormone balances, to immune function stuff. As much as a return to normalcy seems the obvious goal, I’m definitely not normal now – so much pain & fatigue, still, and it just hit me I have no idea what was so great about normalcy before.
Being in the USA, seeing friends, being at Sandy Island with friends (staff and campers) has been incredible because these friends are all hard chargers, both professionally and personally. They’re exciting to be around because they are making the most of all parts of their lives and doing so thoughtfully. One of them asked what the projects were I was referencing in my above tweet, and in full imposter syndrome mode I stumbled at trying to explain what I was going to professionally do.
I constantly share that my biggest life insight is that while you have the time, optimize on the meaning you find in life.

In some rush towards normalcy and wanting to make the most of said normalcy, I find myself leaping to my old life – a life where I didn’t see my family, I made excuses not to see friends so I could just work or do less meaningful things. I told myself that I was going to do loads of things at Sandy this year, and I didn’t – as much as I wanted to. I should have spent more nights with Julz and Katy. I should have visited Anya more. I should have drank with Chris more. So many shoulda-woulda-coulda’s. Instead, I spent a lot of time trying to catch up with online stuff (such slow, at times non-existent, wifi). I spent quite a bit of time in bed – fatigue. I spent time that I have no idea where I spent the time?!
So there, Sandy Island: I‘ve been racing to get back to normalcy, racing to shed my death shroud, and I’m on the verge of disrespecting what I’ve been living through just to feel “normal.”
What is so great about normal?. Many of the years of trying to work as a freelance artist were financially crippling. The past years working freelance and undertaking clinical placement whilst feeling ill were exhausting.
Am I sick or am I better? Is a return to normalcy my goal or my loss? How can I maintain this profound sense of gratefulness for life, if I queue up in the same old lines?
Is my death shroud an exoskeleton I can to pull myself out of, instead of dragging it along?
This summer has given me the time to reflect upon this, and think out what’s next, and Sandy Island people are helping me figure this new chapter out, and reminding me just how lucky I am. I’ve never felt so loved in my life; and I am so grateful to be.
Special friends have showed me just how normal love looks. It’s not always a mad-dash to the airport, it can just be a heartfelt hug for you feeling better. It can be an incredible gift like a personalised book full of love and wisdom to help guide you when you’re not super sure what’s next. It could be a cool turtle dove as a reference to your most favourite movie ever (friends for ever — home alone 2!).
The gratitude i feel for all of this is completely over-whelming.
A pilgrim is said to carry all their back-path with them as they move forward. It is the back-path that brought us to where we are now. Without it, we cannot enter the path that lays in front of us.

So i’ve been asking myself: Can I make a future of the unknown and still be myself? Can I ever return to normal? And why do I want to?
Thanks for reading this far if you have.

Much love always, your friend – smizz x

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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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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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Launching A Radiotherapy Story

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About a year ago, I saw a really cool website from Canada about the Faces of Healthcare.

And I thought, wouldn’t it be cool to have something like this for radiotherapy, and the surrounding services (which is essentially pretty much EVERYTHING in the NHS). Oncology is very much one of the most inter-disciplinary areas within healthcare, ever. From dietitians, counsellors, all different types of doctors, dementia care, mental health, social workers, GPs, ambulance drivers, nurses, students, volunteers, etc — it’s endless! Trying to seamlessly work together to provide the best patient care and experience.

It is for this exact reason why I believe we should celebrate our profession and our patients and their carers and loved ones, and for every single person who is involved within the NHS. Because without them, we’d be a bit lost.

The receptionists who make sure patients get to see the people they need to see. The porters who take the patients to Boots and reading every single sandwich ingredients to the patient. To the volunteers who run Bridge Clinic, and provide unlimited biscuits. To the student who helps someone on and off the toilet… it’s literally endless.

So many people don’t know about radiotherapy. So many patients find the process quite anxiety enhancing due to the lack of personable, friendly, understandable and in-date information online coming up to their treatment.

And as I’ve gone through my training I’ve seen some truly compassionate stuff and heard some amazing stories – of all types. The stories from patients that have stuck with staff, the stories that made staff go into the profession and stay when things have been or become tough.

Patients have been some of my best teachers throughout my training, but some of those lessons have been hard.

And I’d love to share these stories with you. Because everyone’s story deserves to be heard. And i hope through reconstructing these narratives together, we can empower our experiences.

A Radiotherapy Story is photo-documentary on kindness and trauma, on team-working, on suffering and on truly living. On being part of something bigger than yourself.

We want to share with you the stories of these people, of the NHS, to celebrate the pinnacle of humanity and kindness. Of life and death.  I hope you’ll enjoy what we’ve made.

http://www.radiotherapystory.com will be launched in 2 weeks time.

And if you’ve got a story in healthcare that you’d love to share, let us know! Contact: smizz at smizz@sarahsmizz.com or @smizz on twitter.

The project is run by me and Harri Slater.

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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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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:

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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!

Lasso The Moon

This week I was invited to #PatientsAsPartners16 event – It was organized in big part by Roz Davies – as part of Recovery Enterprises in Sheffield, NHS Confederation and Y & H Academic Health Science Network  & a bunch of other organizations and people.

Drawing events and workshops and conferences aren’t an unusual thing for me. It’s a huge part of my bread-and-butter. I  get to draw all kinda of things! From health & social-care, to technology, the government, to film, to education, to science, to social-media, to inspirational stories. You name it. I’ve had the opportunity to have a good draw of it. And in the 5 years of doing it, I’ve learnt a lot about subjects I never would have ever really thought about before. I’d love to, in the future, write a small book – based on all the things I’ve learnt as this “graphic facilitator”.

But  the ‘Patients as Partners’ event and working with Roz again reminded me of where this journey started for me. Back in 2012, I drew a  bunch of events for Roz and her colleagues at NHS England. It was all about trying to make the NHS more “people-powered”. We worked with patients and other service users like carers, ensuring they were part of the new design of PCTs turning into CCGs in march 2013. That the patient expertise and experience was central and a big part of helping local CCGs commission services that reflect the needs of their local community and patients.  That hopefully patients would be partners in this process, and not just an “involve a service user tick box” process.

And these “lay-members” and other patients relayed their experiences of having to navigate this fragmented system that just didn’t understand their needs – even though these needs represent the same needs of 1000’s more living with the same specific chronic medical conditions. And this misunderstanding, or even rejection of their needs, even though not done on  purpose or without care – was the start of a scaring and traumatic time for these people. But they didn’t give up.  They used their resilience to push forward new ideas, and new ways of working. Or setting things up to help others in similar positions. They learnt everything they could, they tried to redesign the system.

I had just started my medical journey at around the same time. And in the beginning it was fine, but the longer I was in this limbo position – the more I hated being a patient. I still hate it, probably even more. I feel judged, in not a good way. I feel ashamed – of myself for not being able to fix what’s happening, for not being stronger. I’m spoken to like I’m stupid. Healthcare professionals (worth noting not all of them, of course) say loaded sentences to me – try and blame things on me because I am “young and female” – seriously -. I feel bad for not fitting into the [healthcare] system (story of my life). I’m an issue, not an assest. I’m “complex in the way I present”. It’s so loaded.  I’m complex because I’m a human being and we are complex creatures, no?   Healthcare professionals can’t wait to discharge me – with no solutions or suggestions or even help. And I just think, my poor poor GP.

(I want to say that as noted in many posts that I have been shown incredible care & kindness by most HCPs and I think the NHS is phenomenal and has saved me in many ways – but that doesn’t mean there’s not issues or unkind words in the process)

And as someone who intrinsically makes connections across fields, knowledge, see how things are linked, no matter how big or small those connection are, who loves working with people, and coming up with creative ways – or trying new things/ways of seeing if something works. I find this whole process really rigid and foreign & I can’t understand why it’s like that? Because surely, people aren’t like this?!

And as a result of this old school way, I’m left completely alone. In constant pain – causing unnecessary health problems for future smizz as I try and figure out whether different things/medications/diets/ect will work. I’d be lying if this experience hasn’t made me Question the value and the worth of my own life. I’m often left feeling like I’m not even worth the time of the system because I’m complex and they’re not understanding how it has all affected me. Having to “live with it” without any direction, advice – or even hope – in what to do to help or move forward. It’s really, really hard.

Luckily, the struggle is my life. And I’m motivated by experience to try and make things better. And whilst I’d rather not have this pain and experiences, it makes me more empathetic to others struggles.

So, drawing all these events – where we’re trying to change culture, to redesign things so that actually we have care – not a just a stop and fix and go system – really resonated with me. And I thought if these people (patients) are using their experiences to make and design new things to compliment the system — then maybe I can use my own experience and my intuitive knowledge/creativity to be a better healthcare professional – and change the system that way. One -on One. Person by person. Making sure people feel listened to. Not judge anyone. And understand that sometimes it’s the really small things that make the biggest differences to someone, so not to just make assumptions. 3 years on, 7 weeks before I qualify, I try and make sure that no one leaves my care without knowing the support, plans and options for them going forward, and i always try and make sure they know that they can come back – – with questions, concerns, ideas. ect.

So that’s why I retrained. Due to hearing all these stories and seeing the virtue of human resilience. Not to back down, to help healthcare to become more than just instruction-based (practice, protocols) but also idea-based (critical thinking, envision ideas of others).

And the artist in me is integral to the process of helping to do this.  Patients as Partners discussed how we need to be more creative. We need to help people understand. We need to re-design new pathways, processes, community links, use peoples knowledge from lived experiences.  Nightingale showed that soldiers weren’t dying mainly on the battlefield, but instead they were dying in the hospitals due to the poor sanitary conditions there. Nightingale used this now famous diagram to influence hygiene practices in military hospitals, which resulted in lower mortality rates. The kind of design that Nightingale used can be thought of as, “Design to improve understandability.”  

For the past few years there’s been debate about healthcare reform. But for all the talk of funding and not being able to afford to do things, there’s a lot less talk about the stories and lives of the people who are the center:  patients and HCP.  And I believe art/design/creativity is going to help us bring the people, their knowledge, their experiences and co-produce things that matter and bring the people who matter to the center of it all (Although NHS does need WAY more funding, there’s no denying this ).

It’s hard to believe that 2012, doing the People Powered NHS and doing the Patient as Partners event in 2016 – of how much it has come together, of how much it has inspired my journey and thought process. And if that’s not proof that peoples stories can help change things and help us learn, help us to empathize, and grow – then I don’t know what is.

There remains a misconception that health is determined by health care. Through hoping to change things through art/design/creativity we can make cities healthier, we can involve the people who it affects, and learn from what helps/makes them worse, we can make people feel more empowered & valued, and in turn we can make people’s jobs feel more satisfied. And we will make the healthcare system more sustainable and caring in the process. And make society healthier and better in the long run.

It sounds all a bit grandiose but actually, after years of listening to people not giving up and showing how they’ve helped to change things locally and beyond through their lived experiences. It’s hard to ignore and not feel inspired. Hold onto ideas, esp when they’re considered risky. We can totally lasso the moon. I’m almost sure of it.

 

This is a great project that showcases the above: http://www.recoveryenterprises.co.uk/about/

Patients as Partners project will be written up into a report with recommendations.

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“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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