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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learning to lean in

Words are  often a poor substitute for imagery.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But I am alive.

I do think about that a lot.

 

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

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

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

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

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

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

 

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

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

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

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

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

I plan on using all of my time allocated.

And I can’t believe I’m here.

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The things I’ve learned from a broken mirror

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

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

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

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

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

To the last 3 weeks!

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0-5.jpg *Hope I pass!*

 

 

Tomorrow belongs to those who can hear it coming

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

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

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

 

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

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

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

 

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

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

 

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

 

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

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

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

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

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

I don’t really know what happened in between.

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

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

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

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

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

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

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

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

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

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

Tomorrow belongs to those who can hear it coming.

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

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

Your good friend,
Hopefully, future Dr. Smizz 😉

PS: my radiotherapy career isn’t over either.

 

 

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Getting sick was (is) the worst thing that ever happened to me, but

Last week Facebook memories reminded me that the exact week in 2012, I wrote on my Facebook status that I was finally seeing a NHS haemotologist oncologist after my crazy USA medical adventure. I have certain dates etched into my collective memory, which feel like I’ll never be able to erase , even if I wanted to. But this date had slipped my memory.  In the facebook status I wrote how many people had sent so many great and supportive messages and had helped me so much. The same still stands today.
Every so often I get a message from someone who’s heard my story, seen my whining tweets/blog,  or I get contacted by various volunteer coordinators for my work with and fundraising for various charities.
Every time, I’m nervous about how the call or the email will go.
But what happens is that they get in touch and often share with me these amazing, personal, intimate stories. These stories are of hardship, courage, loneliness, heaviness, of life and death. Of feeling disempowered, the feeling of the weight of time.
Will I be able to help them? What will I say to this person who’s going through what I know is probably the hardest thing they’ve ever done? I see and feel it every day at work too.
And EVERY TIME, every day I’m amazed.
Amazed by how optimistic and brave people can be, even when they’re terrified. Amazed that even when their life, or loved ones life, was/is on the line and there’s little they can do, we can laugh together about pain, side effects, the dumb things that go along with this life with whatever the struggle is.
Raising money to try and get Radiotherapy in Doncaster ( http://justgiving.com/sarah-smizz1 ) has opened up another opportunity for people to share their stories with me. I feel constantly humbled, and touched that they’ve chosen to share their narrative with me, and want to support me too.
 It reminded me of this website a friend showed me based in Canada, about the faces of healthcare. I think I am going to make something similiar in the UK. I am going to create a beautiful visual platform to help share peoples stories to help us learn from and build better connections and services, and make us think as healthcare professionals how we connect with people. And to also help celebrate not only these peoples lives & struggles, but also how awesome the NHS and it’s staff are too.
This time of year always makes my wounds feel rawer, but my need to thank and be grateful gets more intense too.
 Getting sick was (is) the worst thing that ever happened to me, but in so many ways it brought out the best in me. I guess I shouldn’t be surprised it does the same in others.
3 weeks & 5 days till I can go OTT on giving thanks. FRIENDSGIVING, and y’all are all invited 🙂

A World of Difference

Everything begins somewhere.

 

Very light muscle weakness, a constant-never-ending headache that refuses to disappear,  left facial numbness, drenching nightsweats, bone pain, constant appearances of shingles, heavy, regular nose-bleeds, a fatigue which drags you down & always wins. I tried to accept these changes as subjects of fascination — idiosyncrasies particular to my body. But nothing can prepare you for loosing a little part of yourself, for no justifiable reason.

 

 

In my early -to- mid-20’s, I thought I had things figured out. I thought I was invincible, in a normal every day way. I could take another codeine. I could push through the fatigue, the bone pain. But after awhile it gets actually really hard.

 

It’s very nearly christmas, and all I really want is to feel better again. I know that santa can’t bring me this, but I have learnt that everyday in itself is a gift – however cliched that sounds.

 

This hasn’t been an easy lesson to learn. And when I reflect over the year or two, or three, my whole life has changed in ways I would have never been able to conceive of – say, 4 years ago. If you had asked me 4 years ago if I was going to be working in Healthcare today, I would have been like – what are you talking about?!

 

But it was my experiences (both illness & drawing freelance for the NHS), and ultimately having 2 in particular doctors whose care has been inspirational, amongst many, many other amazing healthcare professionals, that pushed me into chasing my new healthcare venture.

 

I have been shown kindness in ways I never knew existed. We all have those stories of where a teacher has changed your life by believing in you, and taking extra time (I have like 5 of those stories) – if you fall ill, and are lucky enough – you have this story with a doctor, or two.

 

 

Like, the time I turned up at my GP (Dr Pieri) twice in one week, begging him to do something about this horrendous one-sided headache that was making me want to cut my face/head off. Twice. I’ve never-ever done this before but I was getting desperate – (it’s no ordinary headache) – and I needed to get back to just mild-medium pain to function relatively normally. I felt so ashamed of myself and guilty for going twice in one week, what a waste of his time? Who did I stop from seeing him? What will he think of me? I’m the reason why primary practice is struggling.

 

But he offered no judgement upon me. I got him to check my ears, maybe it’s an ear infection I mused? We both knew it wasn’t. But he checked for me because he knew that even though it wouldn’t help me directly,  it would ease just a little bit of my suffering. After checking my ears and saying “nope” out aloud, he put his hand on my shoulder for a moment. It was a hand of compassion. He gave me something for migraines and told me to call him with whether it worked. It didn’t, so I never called him. But I appreciated it in so many different ways.

 

A few weeks ago, I was seeing my endocrine consultant. I told him the usual, symptoms that he had no interest in – that couldn’t be explained by his field. He asked me if I had got back in touch with my other doctor, as he had wrote to me in August. I hadn’t actually received the letter – so I hadn’t replied to accept his help. My heart jumped, i sat up straight and at the end of my chair trying to peer at the upside down letter in my file. I was impressed that I hadn’t been forgotten about. The endocrine doc said, “Dr. Kersh has spent a lot of time thinking about all of this & trying to figure something out for you. He’s actually probably one of the only doctors who is actually interested.” This I already knew, but even this doctor was impressed with the extra time/help I was getting.

 

I’m a curve ball. I needed someone to game the system for me. I felt like I just needed someone to try. Someone who could understand just how delibertating this whole thing is, how I no longer feel like myself, how every day I feel like a hungover – windows computer full of malware and viruses. Dr Kersh made/makes me feel like I’m heard and understood, and what a gift to have – to make people feel less alone.

 

These 2 stories are just 2 tiny examples of the amount of care, kindness, generosity, compassion and time I’ve been given that I am forever grateful for. The extra time they’ve given me which no doubt made their clinics late, breaks probably missed, all the extra paperwork they’ve had to write, all the referrals they’ve had to justify. Words can’t match my appreciation of these people’s hardwork – the care they give to almost strangers – and I don’t want it go unnoticed.

 

Their actions inspired me to get into healthcare. As an artist, all I ever wanted to do was make a positive difference, and help rectify social injustices. I soon realized that actually healthcare is a place where this all comes together.

 

Anton Boisen (1960) coined an approach to care that is person-centred. From Boisen’s perspective, the patient is seen as a ‘living human document’, where practitioners learn about  dealing with illness by listening to, and studying, the responses of their patients. It’s person-centred in that it identifies the sacredness of the lived human experience and the wisdom found in ‘authentic experiences’ as patients respond and try to come to terms with the vulnerability, anxiety or other existential concerns that may arise in connection with their illness (Devenny, 2013). This completely resonated with me and my care.

 

 

It’s weird navigating the system as both patient and healthcare professional in-training. But I feel like I’m in the best place – I can now empathize with suffering which I didn’t before. I just knew it from a system, logical perspective – but now I know it, acutely.   I’m left wondering what is the relationship between empathy and understanding?

 

In the end, I don’t know if the old Smizz will ever return;  I feel profoundly, unmistakably different and broken in a way that’s hard to describe. But when I think about all the help I’ve been given by the super smart, funny, and personable compassionate doctors ( Dr Rod Kersh & Dr marco Pieri) it still takes my breath away when I think about it. I’m not just lucky that I have been given this compassionate care, but I’m lucky that I have some pretty amazing role-models for adventures in my future healthcare career. They’ve shown me that empathy is first an act of imagination, and the smallest of things can make the biggest difference.

 

Since it’s christmas, I don’t mind baring my gratitude for all to see. Thank you to all the amazing people working within the NHS. I will fight to make sure that we all continue to have access to life-changing, compassionate care for free.

 

I know that if I can take any of those guys qualities as doctors, I would become a better person – both professionally and personally.

 

With indebted gratitude and thanks, every day, all day.

Thank you for making a world of difference.

 

 

 

 

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

It’s  nearly 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 really be grateful & help others out – without it having to be related to some underlying pilgrim genocide. But you know, a time to take in & be present for all the small things. Because they 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. It makes me feel like I’m in a Hollywood movie.  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.
2013-2014 was very kind to me, work wise. And you were all very kind to me too. I got to draw some amazing things,  people and talks. Stories.
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.
I tweeted the other day it was the 11th Anniversary from when my mom, bro & i were made homeless for about 6 months – properly (another post for another time). This is something I think of often when I check my privileges.  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. What would be YOUR story?

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 & clinical work – 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. This is like a product of my generation.  But it’s just more proof of not 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.

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 becomes 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 it means attempting to put into place or strengthen circumstances that encourage quality time.

I am learning to be wild again. This week, I – arguably stupidly – decided to not do ANY work after class. I slept (because of the headache) I went on a date! I went to the movies with friends, I had 2 christmas parties, I stayed up and watched the Apprentice, I went reduced food shopping with rich, I finally managed to grab lunch with a friend I haven’t seen properly in ages. And the housemates and I sat down & had dinner together. I needed this. In so many different ways. 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 a new parent, as many of you are this year! 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.
My crazy 8 month headache (nicknamed Trevor today!) 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 live with several groups of amazing and kind friends in 3 different cities at different times of the year. I get to travel. I get to try and make a difference. I get to draw for my job. I get to hear your story. I get to call you my friends.
I believe that whilst our trauma’s may linger, kindness & friendship is the thing that helps us endure.
So this Thanksgiving, I ask you: What endures, what lingers, and what gets washed away?

Happy (early-UK) Thanksgiving, Friends this is for you.

As my American friends will know, we’re celebrating Thanksgiving a week early here in the UK. But never the less. HAPPY UK THANKSGIVING FRIENDS.

Today I am grateful (& everyday, of course). My thoughts on suffering, empathy, and community responsibility have been completely re-shaped and shifted over the course of the journey of illness. New convictions will reveal themselves as life gives me opportunities to feel them, I’m sure.

And now I state it all the time, but it’s because I hardly said it before. I’m truly blessed & thankful for my amazing & supportive family: My mom, Bro & Nan! And for all my wonderful, ever-courageous & kind & giving friends, new & old! I can only do what I do because of y’all. And I owe you all so much more!

Thanks for being awesome. 🙂

Love & Light & survivorship & belief.

Smizz!

HAPPY SMIZZMAS!

Here’s to wishing everyone a super awesome holiday & to an incredible new year! 2012 has been a phenomenal adventure, in which I discovered what an amazing support network of the most generous & kindest & awesomest friends I have. I’m the luckiest Smizz alive! Thanks guys for making 2012 a winner, and helping me out healthwise. I’m grateful & blessed to have you all.

dino